Basket | Login | Register

 
 
 
 

The restriction of the freedom to act according to individual attitudes, values and lifestyle preferences

2012: The ethical issues linked to restrictions of freedom of people with dementia

The freedom to act in a way which is consistent with individual attitudes, values and lifestyles may be threatened when a person has dementia, especially if they move into residential or semi-residential care. They may find that they are more or less obliged to adapt to the way of life of the institution which is influenced by the values and ethos of that institution and by the attitudes and values of the people who are employed in it. However, self-expression is also an expression of autonomy and closely linked to respecting personhood. It is about people’s emotions, how they feel about themselves and their lives, what they want and their wellbeing. It is not dependent on the ability to make a rational decision (Nuffield Council on Bioethics, 2009).

In this section, we discuss the ethical implications of not having the freedom to continue living in one’s own home. We then consider the kind of restrictions which people may experience in residential and non-residential care settings in terms of freedom of choice and self-expression, and the ethical issues that such restrictions raise.  Finally, we describe the ethical issues linked to attitudes and practices regarding the freedom of people with dementia to enter into relationships and to express their sexuality.  

1.3.1       The right to live in the community versus social segregation

Most people with dementia live alone, with relatives or partners or in residential homes. Some live in religious institutions or prisons or are travellers or homeless but very little is known about their living arrangements and about the provision of services to people with dementia in these groups. Depending on opportunity and financial means, some people would prefer to live amongst others in a residential setting with round-the-clock care, support and security. Some would not.

Family patterns are changing in that more women are professionally employed compared to previous generations. Even though the vast majority of informal carers are female (i.e. wives, daughters and daughters-in-law), in some countries there is a move away from the expectation that they will care for their ageing parents. The gender difference in the provision of care to older people is much lower for older people as men provide as much care as women when it is to their elderly spouse (Hoffmann and Rodrigues, 2010). However, this only applies to the older age groups. Whereas in the past, it was common for different generations of the same family to live together, this is less common nowadays. The projected support ratio of women aged 45-64 (the age group most likely to provide informal care) for each person aged 80 and above has diminished in the last 15 years in many Western European countries.

In most countries, there is an assumption that the spouse will take care of their partner with dementia. In some, such as Austria, the principle of subsidiarity (Subsidiaritätsprinzip) operates which means that there is an order for financial responsibility for care: 1st the family (including adult children), 2nd the commune, 3rd the provincial state (Land) and finally, the State. The right of the spouse or adult child to decide whether or not to become the carer of the person with dementia is rarely taken into consideration. In a survey-based study into the experience of care involving 585 carers in ten European countries (including Norway and Iceland), 50% of female and 35% of male carers strongly agreed that they had “drifted into care” (Alzheimer Europe, 2001). The two most common responses to an open-ended question about factors affecting the decision to become a carer could be summarised as reflecting duty/responsibility and having no choice or alternative.  

Some people with dementia find that they (or their relatives or partners) can no longer manage daily life due to the consequences of dementia and some have no relatives or close friends to provide care for them. These people may eventually move into residential care reluctantly or against their will because the state does not provide the necessary amount of care to enable them to stay in their homes. This results in a loss of freedom (i.e. the freedom to live and participate in the community, the right to liberty and freedom of movement, the freedom to choose the kind of care arrangements they would like and the freedom to choose with whom they will live and associate). This fails to respect their autonomy and singularity, as well as the principle of beneficence and justice.

Similarly, informal carers who look after a person with dementia at home, but do so as they feel that they have no choice, have also not decided freely. For some, this might reduce their freedom to pursue a career, to enjoy their social life and to fulfil certain plans. In both cases, one or more people experience a restriction of their freedom due to a lack of adequate or appropriate support from the State.

The question is “to what extent is it the State’s responsibility to provide such care and support?” As explained above with regard to the principle of subsidiarity, some countries have an order of responsibility which includes the State. In many, there is limited state support specifically for people with dementia and the kind of care and support provided by the State is often inadequate and inappropriate (Alzheimer Europe, 2007). The Convention on the Rights of Persons with Disabilities (which includes dementia) covers the right to live independently and to be included in the community. Article 19 is particularly relevant.

 

 

 

Article 19 - Living independently and being included in the community

States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

  1. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
  2. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
  3. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

Source: http://www.un.org/disabilities/convention/conventionfull.shtml

 

 

 

This brings us back to the issue of reasonable accommodation which was discussed in section 2.1.1 with regard to involuntary detention. However, there are also issues related to subtle coercion. People who are capable of making a decision about their current or future care do so based on their wishes but also an analysis of relevant information. This includes weighing up the pros and cons of available options. If they find that affordable options do not exist to enable them to stay at home, they may opt for residential care. However, the fact that various options do not exist or are not available or affordable to them may be unjust (particularly in the light of reasonable accommodation). They may also be influenced in their decision by the perception of society’s view of people with dementia based on stereotypes and devaluation.  Bursztajn and Brodsky (undated) suggest that people may disavow what they might actually want if they are conditioned to believe they cannot have it or should not ask for it. They add that older, chronically ill people are especially vulnerable to such demoralizing influences. Negative perceptions of dementia may result in lower expectations and a failure to challenge to current provisions. 

The Mental Disability Advocacy Center (MDAC) (2011) suggests that States should take measures to phase out institutions and direct funds towards providing services in the community in line with the social model of disability. The Alzheimer movement in Europe tends to argue in favour of good quality residential facilities for people with dementia, as well as good quality home care and support in order to enable people to make real choices about their care and livings arrangements. It is therefore not against residential care but against ill-adapted and inappropriate institutions. Some countries have large scale institutions in remote areas which do not represent good quality care but which are the only support available. Having institutions in remote areas represents a geographical but also psychological separation of people with dementia in that it facilitates their categorization as a separate group which is one of the components of stigma (Link and Phelan, 2001; 2006). In practical terms, the geographical distance may be detrimental to their wellbeing as it is more difficult for people to visit, especially for older people (e.g. the partners of the older people with dementia), many of whom have mobility problems and may also be unable to drive for health or other reasons.

In the Norwegian Dementia Plan 2015, it is stated that 80% of people in nursing homes have dementia and are living in nursing homes which were not built for or adapted to their needs. Their plan is to adapt such institutions and rebuild more in the form of small-scale communal living arrangements and wards with programmed activities and direct access to adapted outdoor areas, and to do away with old-fashioned multi-story institutions with large wards and long corridors (Norwegian Ministry of Health and Care Services, 2008).

Other countries have developed different approaches to residential care. Examples include the “Wohngemeinschaft” in Germany where people with dementia live together in a group living situation and bring in the support they need from outside as they would were they living alone in their own homes. Their place of residence is actually considered as a private home and not as residential care. Another example is “De Hogeweyk”, an Alzheimer village near Amsterdam (Saxl, 2012). The setting reflects daily life, not only for people of Dutch ancestry but also of the many people of Indonesian origin who live in the Netherlands. However, the village, like many old-fashioned institutions, is located at a distance from the rest of the community. It does not constitute a dementia-friendly society but rather a dementia-friendly establishment. Measures to enable people with dementia to have the choice to remain in their own homes should focus not only on the provision of support at home but on changing attitudes and practices within society which make it difficult for people with dementia to live independently or with assistance.

1.3.2       Practices within residential and semi-residential care settings

The focus of this section is on the consequences of not having the freedom to live in one’s own home. Irrespective of whether people with dementia move into residential care by choice or otherwise, they are likely to have to abide by the rules of the institution and to adapt their lives to the expectations, practices and rules of that institution. This represents a loss of freedom of choice and of self-expression.  

The term “institution” will be used in this section to describe the place where people with dementia receive residential and semi-residential care. In most cases, this would be by paid staff but in some cases, it might be by volunteers or members of religious orders. The use of this term is in keeping with the use of the term “institutionalisation” to describe the process of moving into such long-term care establishments.

A major criticism of institutions is that they are impersonal, dehumanising and socially segregate people from their communities. It has also been argued that they violate people’s right to autonomy and threaten their dignity (MDAC, 2011). There is undoubtedly a huge difference between institutions in different countries, within countries and also between institutions for different categories of residents (e.g. people with learning disabilities, older people and/or people with dementia). There are also differences in how people define an institution. For some people, it might be a place where social welfare and accommodation is provided, for others a psychiatric hospital, a nursing home or a special Alzheimer unit. This section considers certain practices which restrict freedom in institutions. Some of the issues raised are taken from the work of Erving Goffman entitled “Asylums: essays on the social situation of mental patients and other inmates” (published in 1961) which were based on a qualitative study using observational methods. Goffman considered “total institutions” in the broad sense, not only as relating to mental institutions but also to prisons, armies, schools, monasteries and places “to care for persons felt to be both incapable and harmless” (Goffman, 1961, p.4). Some of his claims have since been challenged on the grounds that his work was negatively biased, contained over-generalizations/unfounded claims and was not supported by subsequent empirical data (Weinstein, 1982). Certain points may nevertheless be relevant to the situation of some people with dementia in some institutions.

Feeling “at home”

The term “home” is generally used to refer to a house, dwelling or other place of residence and a place that is dear to one or has some personal meaning. For some people, home is a village, town or region. In most cases, when adults talk about “home”, they are referring to a place which is private and personal even if they share it with other people (as usually they chose to live with those people). It is also generally considered as a safe place and a place of shelter from the wind, the cold, the rain and even the sun. In most cases, people feel “at home” there, they invest in that living space, personalise it and can behave differently than when they are in the public sphere. The home is an area where people can express their individuality, through the building and also through the way that it is furnished and the personal objects it contains (Charras et al., 2011a).

Even within the home, there are likely to be areas to which people can withdraw for more privacy. People can be themselves and relax in a way that is not generally possible outside the home. As it is their personal space, people tend to organise routines with their home and make their own rules. Most people help maintain their living area, taking care of it as it is personal and usually their responsibility even if they do not own it. Phrases such as “in the comfort of your home” and “make yourself at home” suggest that homes are comfortable places where you can relax and be informal. The criteria to call a place a home, in which one can “feel at home”, might therefore be described as being: privacy, protection from the elements, safety, personalization, conviviality, informal, relaxation, comfort, responsibility, a place to be oneself and a place where one makes one’s own rules. The home is thus a physical as well as social environment (Moser, 2009).

These criteria do not necessarily apply to the establishments often called “homes” in which people with dementia live. These are places of communal living, organised in most cases by paid staff with or without medical or social training. Whereas most people feel “at home” in their own private homes and some in places which they have made their home, this is not always the case in residential, nursing or care homes. People in such homes sometimes lack privacy, the right to personalise their surroundings and the right to make decisions about life within the home. The presence of paid or even voluntary staff blurs the boundaries between formality and informality and between the private and public domain. The rules in a home, for example, may be formal, imposed and lead to sanctions whereas those in one’s own home tend to be informal, mutually agreed upon and more flexible. However, homes can be very different depending on how they are organised, the ethos of the home and mentality of the people who live and work there. This may also affect the extent to which people feel at home in them.

Freedom to go outside

A home is usually a building or part of a building but also often considered as extending to the area immediately surrounding it and even the community in which it is located. Some people with dementia do not have the opportunity to go out. Their whole world becomes restricted to a series of rooms and some of them may be confined within four walls. This represents social exclusion, is an infringement of the right to move about freely, fails to respect their human dignity, is an abuse of power and fails to make reasonable accommodation in order to enable people with dementia to benefit from the same rights as other people. In forcing people with dementia to remain indoors, they suffer from a lack of fresh air, exercise and sunlight, of contact with nature, the seasons and the weather and of interaction with a different set of people. The benefits of outdoor access and of people’s right to go outside have been recognised yet as Pietikaïnen (in print) points out, that right is better enforced for prisoners than it is for people in nursing homes. This is clearly unacceptable. It is unacceptable to deprive people with dementia of this right even if they have been involuntarily detained.

Unequal power relations

In many institutions, there are differences between residents and staff in terms of the power to make and enforce decisions, as well as differences in living conditions. Power may be exercised at different levels by different members of staff and management. It may, for example, consist of controlling access to alcohol and cigarettes, controlling visits and purchases, requiring people to eat, sleep, wash and go to the toilet at set times and using chemical and physical restraint. People with dementia may lack the power to enforce their rights and preferences due to cognitive and physical impairments but also due to their perceived or actual lack of power.

Unequal power relations may be created based on how people with dementia in institutions are defined and how their presence in the institution is perceived. They may, for example, be considered as residents (a fairly neutral term), clients (which perhaps suggests an exchange whereby accommodation and care are provided in exchange for payment) or patients (which might suggest that the person has needs which must be met by others with the knowledge and expertise). The way that the care is financed and where it is provided may also affect how the person with dementia is perceived. In some countries, people with dementia are cared for in a range of institutions such as the geriatric department of hospitals, in old people’s homes or in mental hospitals in Latvia, social houses in Bulgaria, government-owned nursing homes and care run by the Church in Hungary and Greece (Alzheimer Europe, 2007). There is therefore a risk that people with dementia in some forms of long-term care are perceived as social welfare recipients, mental patients or beneficiaries of charity rather than as equals with a right to be cared for. This may lead to stigmatisation and influence the expectations of people with dementia and care providers about the quality of care required and the power relationship between the two groups.

The fact that care providers have access to and control information about residents, including very personal details, and can observe them going about their daily lives, also creates a potential power imbalance. Residents’ private lives become public but they have no information about the private lives of staff, unless the latter decide to share it. On the other hand, knowledge is needed about residents if staff are to provide care in an ethical manner, taking into account each person’s values, experience of life, needs and preferences. Knowledge for the sake of knowledge is of limited value but taking the trouble to get to know a resident and taking an interest in their life out of genuine interest or concern about their wellbeing is a different matter.

Role dispossession

Goffman (1961) describes a process of role dispossession whereby, on entry into an institution, a person loses the roles they previously held. The roles that people acquire throughout their lives tend to be constructed around practices, within specific timeframes and in relation to other people. When a person is taken out of their familiar environment and away from the people they know, and when they are obliged to abide by different rules and schedule their day in a different way, it is difficult to maintain many of those roles. This may have serious repercussions on their wellbeing. The social roles we adopt are part of our identity and of what makes us unique. In the context of mental institutions, Goffman suggests that role dispossession is a deliberate process to sever the ties with the outside world and part of the process of depersonalisation intended to make residents more malleable. In nursing homes, one might imagine that this is not the case. Moreover, in the case of dementia the loss of social roles is often a gradual process which starts prior to and during institutionalization. However, there are anecdotal reports of relatives being asked not to visit people with dementia when they first move into residential care in order to allow them “to settle in”. Whilst institutions cannot be held responsible for the gradual loss of social roles, they are responsible for practices and procedures which unnecessarily contribute to that process as that would fail to respect individuality, dignity and beneficence.

Belittling or demeaning practices

The deliberate belittling or demeaning of residents would obviously be unethical and fails to respect their uniqueness and personhood. This could also occur in people’s own homes as well as in residential care. It might also happen inadvertently through a lack of attention to people’s feelings and through the careless implementation of certain procedures. Practices such as being obliged to ask for little things such as a cigarette or cup of tea, to use the telephone or go to the toilet, places people with dementia in a submissive position which is unnatural for adults and leaves them open to belittling attitudes and behaviours from others such as being teased, denied, questioned, ignored or put off (Goffman, 1961). Having to ask for various items may also be linked to residents having to use standard supplies (e.g. of soap, shampoo and even toilet paper), which itself fails to respect individuality. Asking for something that is needed is not demeaningper sebut it becomes so if the person feels that it is unjust, that there is an implied lack of trust or that it is an abuse of power. In several psychiatric institutions and social care institutions in Croatia investigated by the Mental Disability Advocacy Center, it was common for residents not to have their own soap or toilet paper, and such items were sometimes rationed (MDAC, 2011). It is not known whether similar practices exist in institutions where people with dementia are cared for.

Belittling and demeaning practices are also closely related to dignity and privacy. Examples include supervising a person in the bath or in the toilet area when it is not strictly necessary or when alternative solutions could be found which would be less intrusive. The way that staff deal with incontinence problems may also be experienced by residents as belittling or demeaning. This might involve talking loudly about what has happened, making a fuss about changing sheets, blaming the person or not being discreet about the use of continence aids.

In some long-term care establishments and day care centres mini-buses are used which have the name of the establishment, day care centre or Alzheimer association painted on the side. Some people with dementia may find this humiliating and feel that their privacy is not being respected whereas others may not be fazed, considering that dementia is a condition like any other and nothing to be ashamed of. Some might not even pay attention to this detail. There are arguments for and against this practice. One argument is that it is stigmatising in that it serves as a means to label people on the basis of having dementia. Another argument is that whilst dementia may be commonly considered as a stigma, bringing it out into the open serves to break the taboo and associated fear which contributes towards stigma and it is therefore a positive action against stigma. Both arguments are defendable and opinions on this issue are likely to differ. Unfortunately, the people with dementia who are transported in such vehicles may not all share the same opinion. Some may suffer from feelings of shame and not have the luxury of choosing an alternative form of transport.

Deference patterns and assaults on the self

Goffman (1961) describes a situation in which self-protective expressive responses to humiliating demands (such as expressions of irony, contempt or derision, swearing or sullenness), instead of serving to maintain the person’s sense of dignity and conception of self, are turned back on them and lead to further humiliation. This prevents the person from creating a distance from what is happening and to “save face”. This extreme control of personal expression is probably not very common in long-term care institutions. However, people with dementia may express themselves in different ways, through subtle and less subtle gestures and actions, especially when they have difficulty communicating verbally. The result may be similar in that they may be categorised as disruptive or as displaying challenging behaviour and thus further controlled in their freedom of expression.

This has similarities to another of Goffman’s concepts, namely “assaults upon the self”. This concerns the importance of being listened to which involves being seen as capable of receiving and conveying a message about one’s actions, sustaining some vestige of the notion that one is self-determining and retaining physical distance from others. The example is given of a person with a mental disorder whose speech is discounted as a mere symptom.  This may be accompanied by a rhetorical use of language such as “have you washed today” or “have you got both socks on?” which is accompanied by simultaneous searching (e.g. checking if the towel is wet or looking at the person’s feet). This makes the verbal question superfluous and indicates that the interlocutor either does not value or has no interest in the response. Similarly, instead of being asked to do something, a person may be pushed along or have something done to them. Such practices are demeaning and could also be perceived as objectification, infantilisation and acts of coercion. The practice of asking questions to which an answer is not expected or taken into consideration may, on the other hand, reflect a genuine desire to communicate with a person who is not considered able to do so. The extent to which such practices are demeaning may therefore depend on whether the carer has correctly assessed the level of communication and understanding of the person with dementia, and the way in which they interact with the person with dementia.

Freedom of expression and choice
Clothing

In some institutions it is the policy that residents all wear standard clothing which is shared. Sometimes they are given clothes which are not theirs (either deliberately based on the policy of the institution or due to insufficient care and mixing people’s clothes up). Clothes are usually chosen for their ease of maintenance rather than style. In some nursing homes, residents are heavily dependent on the home for appropriate clothes which in some cases are obtained from charities. In the UK, collective clothing regimes are not permitted so residents have to wear their own clothes. However, according to Twigg (2010), standardised forms of clothing provided by the state and shared by residents are still common in some countries such as Finland (Topo and Iltanen-Tähkävuori, 2010). This practice may diminish personal identify and self-esteem. It devalues, dehumanises and is disrespectful. In addition, it fails to respect autonomy and the possibility for residents to express themselves (i.e. their personality, style, mood and social status).  Moreover, it undermines the importance of supporting the identity and personhood of people living with dementia.

Depriving people of the freedom of expression through vestimentary choice is sometimes due to greater importance being given to the convenience of care staff. Sometimes, it reflects rules about washing which do not extend to wool or delicate fibres. There may be regulations, especially in the case of incontinence, that clothing be washed at 65°C for 10 minutes which rules out certain fabrics (Twigg, 2010). Personal belongings such as clothes may therefore interfere with the smooth running of the institution as staff have to keep track of people’s clothes and wash them separately. Ensuring that residents share the same clothes also saves time (linked to choice) and means that staff can make choices based on efficiency rather than on residents’ autonomy, self-esteem and personal identity (Goffman, 1961). In this way, people with dementia in care homes often have to adapt to the rules and in so doing lose some of their freedom of expression and choice.

People express their personality, mood and style through clothing. It can also be used as a means to convey social class. Depriving someone of the freedom/right to wear what they choose may prevent such self-expression. Drawing on Hughes’ concept of the situated embodied agent whereby a person physically acts in a specific culture and historical and social context, Twigg (2010) argues that clothes are part of this and of the continuing narrative of self through which people express their position within particular social worlds. The clothes that people in some establishments end up wearing may be totally inappropriate to their style and habits.  It has been argued that people with dementia lose interest in dress and appearance, and later in personal hygiene (Jenkins and Price, 1996). Kontos (2004) showed in an ethnographic study that this is probably not the case, providing examples of people with advanced dementia carrying out habitual gestures of grooming such as trying to put on lipstick whilst approaching a social event and placing a pearl necklace in front of a bib.

Twigg (2010) argues that people with dementia are often given clothes which are “comfortable” and easy to get on and off but that people with dementia do not all have the same notion of comfort and may feel very uncomfortable or uneasy sitting around in what they feel are inappropriate clothes such as track suit trousers and T-shirts. She adds that for men, trousers without a zip fastener may be perceived as a challenge to their masculine identity and a form of infantilisation. This demonstrates that psychological comfort as well as physical comfort may be equally if not more important. Calnan et al. (2006) point out that older people (without dementia) regard dress/attire as a significant aspect of dignity and that being properly dressed when not able to dress oneself is a sign that one is being treated with respect.

Personal belongings

Personal items and clothing often go missing in institutions. Perhaps they are stolen, perhaps they are mislaid or given away. Losing personal items can be distressing for anyone, especially if they have sentimental value. For people who are living in institutions, personal items may enhance their feeling of autonomy and security (MDAC, 2011). Some of the items may be nostalgic and emotionally laden (e.g. photos of a deceased spouse, grandchildren who never visit or a pet which had to be rehomed). It might not be possible to ever replace them. The loss may serve as an irreparable loss of a visual reminder of the past. The loss of possessions can also be disturbing to relatives and carers who may have bought them for the person with dementia and may also be upset at seeing that person wearing inappropriate clothes which are not their own.

People with dementia who live in institutions have the same right as anyone else to own personal possessions and for those personal possessions to be properly protected yet in some homes, there are no lockable cupboards or rooms. In any other situation, the loss of a personal item would be taken seriously and attempts made to recover it. Legal steps might even be taken. With dementia, the person taking the item might not be aware that it is not theirs but it cannot be presumed that this is always the case. Moreover, items may be taken by staff or visitors. There may be a tendency to underestimate the importance of items which go missing in institutions or to consider this as inevitable and, in so doing, fail to prevent harm arising from that loss.

The provision of locked cupboards may occasionally lead to problems with the hoarding of food which is then eaten when rancid, as well as the loss of keys. Whilst these problems would need to be addressed, they should not be considered as grounds to prevent people with dementia from having lockable cupboards.

Residents often have no control over finances or their access to money is limited. This also applies to many people with dementia living at home with relatives or who have a legal guardian with responsibility for finances. Those living in institutions may, in addition, lack the opportunity to buy clothes or personal items (MDAC, 2011). They have little opportunity to go shopping and the wisdom of certain purchases may be challenged on the grounds that they are not useful or necessary. Frivolous purchases may be perceived as evidence of vulnerable people being taken advantage of. In some institutions, residents might be able to purchase items and services through catalogues and “Tupperware style” events or services such as a manicure or haircut (if the providers visit establishments). The freedom to be a consumer may also be limited for people living at home who cannot go out shopping alone and are not taken out. Shopping is not merely functional. It is about having the power to purchase, the opportunity to go out, see different things, meet people and chat and a way to express individuality and choice.

Twigg (2010) highlights the symbolic transition towards death starting with the gradual loss of possessions (e.g. things get stolen, no place to put possessions, staff think they are not necessary etc.) to the ultimate loss of all possessions though death. Within this process, the loss of objects with sentimental value or which are nostalgic may further erode memories and the link a person has to their own past.

Personalisation of living area

The right to have personal belongings has been discussed in terms of the right to express oneself and be surrounded by familiar objects. People who live in institutions are usually deprived of the right to make decisions about the environment in which they live, both the communal living areas such as lounges and kitchens and the private living areas such as bedrooms and in some cases bathrooms. Day after day, residents sit in chairs, sleep in beds, eat at tables and look at an interior design which they did not choose. Irrespective of whether they like these objects and the overall design, the fact that they are not consulted represents a lack of respect for their autonomy or concern for their wellbeing.

Opportunities for privacy, including the possibility to personalise living spaces in residential care settings, were found to reduce agitation in a study carried out in America (Zeisel et al., 2003). The possible effects on behavioural disorders of the personalisation of living spaces for people with AD were tested in four special care units in a hospital in France (Charras et al., 2010). In two of the units, residents and families were encouraged to personalise rooms with the help of a member of staff but not in the other two units which served as a control. Personalisation was not found to reduce agitation but it was associated with a tendency to gain weight (which the researchers interpret as a measure of quality of life), less disinhibition and less apathy. The researchers suggest that the personalisation of rooms might serve a similar function to reminiscence work, by stimulating memory and other cognitive and affective functions, as well as enabling professional carers to become better acquainted with each resident. The freedom to personalise living areas therefore has implications for health, well-being and quality of life.  

In group living situations, decisions about furniture and furnishings may be affected by a range of factors such as cost, maintenance and safety but even within these constraints, it would be possible to involve people with dementia when new purchases or changes are made. If some people with dementia are unable to communicate their preferences, carers may be able to help as they are likely to know the fabrics, colours and styles they prefer. As with any group, there would be different preferences and tastes amongst the residents. Residents should nevertheless be consulted about decisions concerning the environment in which they live 24 hours a day. This was shown to be possible in a study carried out in eight special care units in France involving 63 people with dementia (Charras et al., 2011a). In this study, after a two-day period of observation of how residents, staff and relatives used the space, related to it, moved around and interacted, a series of arrangements for the environmental design were proposed by the researchers. Financial constraints, security issues, technical feasibility and the remarks made by all concerned had all been taken into account. The residents were further involved in the implementation of the proposed changes through participation in the choice of furniture, materials and colours. Various methods were used to achieve this such as catalogues, examining different possibilities, going together to specialised stores and asking representatives of stores to come to the special care unit.

Non-individualised care

Many residents live, eat, wash, socialise, dress, undress and sleep in the same room as other people (MDAC, 2011). This represents a total lack of privacy and a failure to respect individuality and choice. It also deprives people of the freedom to totally relax, be themselves, collect their thoughts and “switch off”.

In many residential care settings, care staff have working routines which help them organise their work and ensure that everyone is provided with the care, services or support they need. The issue of justice is relevant as care staff have to ensure that they care for everybody and do not spend a disproportionate amount of time attending to the needs of a small group of people. However, this means that residents often have to fit into the schedules of care staff and notvice versa. Another consequence is that care may be provided at times which are inappropriate or undesirable (e.g. people may be wakened at 6 o’clock in the morning to be washed, have to wait until 10 o’clock for breakfast or be helped into bed at 8 o’clock in the evening). It also means that some people will be hungry and have to wait for a meal whereas others will be offered food when they are not hungry.

Assistance with washing (and bathing) is also often provided in a way which does not respect the needs and wishes of the individual. According to Gastmans (2004), washing (and bathing) has become a routine, taken-for-granted ritual and symbol of good care. However, he suggests that washing is more than a physical action and has ethical implications. He highlights the need to respect people’s privacy and dignity, their intimate sphere and their bodily integrity, to take into consideration their preferences about the manner in which they are washed and what they have become accustomed to in their lives and to be attentive to their needs in order to promote their wellbeing. Gastmans (2004) points out that time constraints may result in failure to respect people’s rhythm and rule out the possibility for them to participate in the task or to wash themselves (which may reduce their opportunity to express their autonomy). Gastmans (2004) emphasises that residents are not passive recipients of washing and that failure to ensure that the manner in which they are washed or bathed corresponds to their needs may result in shame, loss of self-esteem and identity, fear and aggression. This is not in keeping with respecting personhood, promoting wellbeing and the principles of beneficence and non-maleficence. These same issues would equally apply to people with dementia in need of assistance with washing at home.

According to Sloane et al. (1995), coercion should only be used to ensure that a person is washed if failing to do so would lead to serious health problems. It is probably quite rare that not washing would lead to serious health problems or that coercion could be justified.  There is a risk that coercion might be too hastily applied without the necessary care and attention having been given to discovering possible reasons for the person’s refusal which they may be unable to communicate and which may be linked to their past, the way that washing is carried out, the environment or other physical, practical or emotional factors.

In some institutions, some services are offered on the basis of quite rigid “rounds”. This is often the case for tea (or coffee depending on the traditions of each country) which is provided at certain times of the day. Drinking, like breathing in air, is a physical necessity and should not be restricted under any circumstances. Whilst this need could be satisfied with water which might be readily available, people with dementia may forget to drink or not be accustomed to drinking water. Tea rounds are a good way to remind residents at regular intervals to have a drink and avoid dehydration. Having a cup of tea can also be a social act. It can bring people together and provide an opportunity for small talk and interaction. Being able to offer visitors a warm drink is also a social convention, which gives people with dementia an opportunity to demonstrate hospitality and to reciprocate, which according to (Vernooij-Dassen et al., 2011) is often lacking. People also drink tea and coffee out of boredom or habit, in order to relax or for the pleasure of the taste. It is therefore important that tea is not provided solely on a functional, routine basis which does not respect their autonomy or individuality, or promote their wellbeing.

Another example of care provision which is not adapted to individual need is the “toilet round”. In some establishments, residents who need assistance to go to the toilet are obliged to wait until set times at which they may be accompanied by care staff. Artificial and external control of this basic human need may lead to discomfort, stress and problems with continence. Some residents may have visitors who can accompany them to the toilet at other times and some may have the means to pay for additional assistance. However, not all have such opportunities and this creates a system of discrimination and inequity in the provision of care. This system of toilet rounds may also contribute towards the inappropriate use of continence aids such as continence pads, commodes and catheters. People may be designated as having continence problems simply because they cannot adapt to the system of care provided. Such measures therefore restrict the freedom to go to the toilet if and when necessary. They may also result in shame and reduced mobility. Continence aids may be necessary and appropriate for some people with dementia depending on their needs but their inappropriate use is abusive and unethical.

With regard to choice of food, it might be unrealistic to expect establishments to provide residents with the possibility to choose from a varied menu. Dietary requirements linked to religious beliefs, food intolerances and life choices (such as being a vegetarian) should nevertheless be respected. However, people may also have strong dislikes and preferences. Food may be one of the pleasures in life they can still enjoy and this should be taken into account. The timing of meals, the quantities provided at each meal and variety in the meals provided may be important to residents’ wellbeing and are areas where feedback could be sought. Even small changes to standard procedures could have an impact on wellbeing and respect the autonomy of the residents. While the principle of justice is relevant to ensuring that a system is in place which means the needs of one group do not lead to the neglect of another, it is also important to understand that treating different situations the same is not just or equal.  Rules and practices which are applied equally to everyone may have a disproportionate adverse impact on people with dementia or other disabilities and thus constitute a form of indirect discrimination.

Spirituality and religious beliefs

People with dementia may have spiritual and religious beliefs or practices which are meaningful to them. These should be respected and, as far as possible, fostered.

As institutions may have residents practicing a range of religions, it may be difficult to provide places of worship for each religion. In some establishments, including hospitals, there are common places of worship where people from any faith can gather. Setting up such a room does not require a huge investment and may be particularly welcomed by residents who are not able to attend public services in the community. Religious leaders could be invited to visit and hold services. However, according to the principle of reasonable accommodation, efforts should also be made to enable people with dementia to attend public services. This would enable them to participate in society on an equal basis with other members of the community. If establishments do not have the means to provide transport and staff, it may be possible to involve members of religious communities or volunteers to accompany people with dementia.

It is also important to respect the right not to practice religion. In countries where care institutions are often run by religious orders or have a religious ethos, people of minority religions or no religion, or who have ceased to believe in or practice the religion they were brought up in, may find themselves in religious environments through lack of genuine alternatives. They may find themselves being included in religious ceremonies (often through an assumption that they will wish to be included rather an intention to coerce), visited by clergy, or in an environment where there is a lot of religious iconography. It is important also to remember that some people may have had a profoundly negative experience of religious institutions (for example the prevalence of physical and sexual abuse in religious-run schools and children’s homes in Ireland is well documented)[1]. In these cases, environmental factors which are comforting to many and may seem innocuous may in fact trigger feelings of disempowerment or in some cases extreme distress. It is essential that staff are aware of the subtler environmental factors relating to the practice or non-practice of religion and  proactive and sensitive about establishing an  individual’s preferences rather than simply making assumptions based on the demographic to which the person belongs.

With regard to spirituality, this is sometimes more difficult to grasp. According to Holloway and Seicol,

“Spirituality is not what many think it is. Spirituality is to do with who we are and what life is about. It is not far away. It is very close to where we live. It has to do with our deepest longings, our sadness and joy, our loneliness and friendships, our fears and our times of trust, our beliefs and our disbeliefs. It has to do with the very essence of our being” (cited in Bell and Troxel, 2001).

As such, it could also be understood as covering the major existential themes described by Yalom (1980) i.e. death, freedom/responsibility, isolation/loneliness and meaninglessness. Spirituality is therefore a broader term than religion. Whilst many people express their spirituality through religious practice, others express it through their relationship with nature, music, the arts, family and friends or a set of philosophical beliefs (Sulmasy, 2002). In fact, there is a risk that healthcare professionals who equate spiritual needs with religious needs might overlook the spiritual needs of people who do not overtly practice a particular religion (Narayanasamy et al., 2004). Spiritual and religious beliefs and practices may be shared or private but they are very closely linked to individuality which people with dementia should be free to express and which should be respected by others.

Control through procedures and environmental factors

Charras et al. (2011b) draw attention to the way that residents in institutions are sometimes manipulated into taking certain choices or behaving in ways which restrict their freedom of movement. An example is the dimming of lights in certain areas at certain times of the day to dissuade people from going there. Another example is the practice of locking doors to people’s rooms during the day in order to force them to occupy the communal areas and prevent “wandering”. The authors suggest that most toing and froing between private and communal areas is not without purpose but rather part of claiming the living area as a real home and of marking the difference between “my home” and “our home”. However, this is unlikely to occur if care staff are over-protective and restrict the rights of residents to make use of facilities (e.g. by barring access or requiring authorisation to use the kitchen). In such cases, the atmosphere and freedom that is typical of real homes (with real kitchens where people can go and make a cup of tea or a snack) would be a simple façade and a reminder of the freedom that the residents have lost. Moreover, as pointed out by Merton (1968), preventing people from carrying out certain tasks due to the possible dangers involved may serve as a self-fulfilling prophesy resulting in the loss of the skill which then may result in a potential danger. Nevertheless, official health and safety regulations would have to be adhered to within care homes in order to avoid litigation in case of accidents. On the other hand, the use of assistive technology, perhaps including surveillance technology, might help ensure that regulations are respected.

Monotony and denial of opportunity

The restriction of opportunities and of the right to choose may lead to a monotonous existence. Restrictions might include access to leisure and social activities, access to fresh air and the absence of daily activities and pleasures (including smoking, drinking coffee or alcohol and having a nap). In some establishments, staff control access to cigarettes and the right to smoke. Whilst there may be medical reasons which indicate that smoking is not in a person’s best interests, it must be acknowledged that it is not in anyone’s best interests to smoke and yet most people retain the right to do so. It is unlikely that a person with dementia would have taken up smoking after the onset of dementia, having never smoked before. Consequently, it would be unjust to deprive them of the right to smoke based on having dementia. Increasingly, buildings are becoming non-smoking and residents may have to go to certain areas to smoke. This is the same for everybody in public buildings but for people in residential care, it is their home. If they need assistance to go to the place where smoking is permitted, they may be dependent on the goodwill or availability of staff who may prefer to take several people at the same time. This takes away the freedom of smoking as a spontaneous act, a pleasure or a response to a need. If a person is unable to go outside and the building has become their whole living area, the need or desire to smoke may go unmet. If they have the capacity to decide to go into a residential home which has a no-smoking policy, this would not be unethical provided that they knew in advance and had a real choice in accepting to live there.

Other issues, linked to a monotonous existence and lack of opportunities, include the practice of leaving residents sitting in a chair all day long and all evening. If meals are provided, shopping is taken care of, rooms are cleaned and maintenance of a car, garden or house front not possible, there is no opportunity or need to do anything around the “home”. People may appreciate this for a couple of days, but few would probably like an existence consisting solely of this. Yet this is what happens in some homes. People have nothing to do and are therefore also limited in what they can talk about with the same people they see every day. Lack of stimulation, movement and objectives may contribute to social withdrawal and apathy in a kind of self-fulfilling prophesy. Social activities and stimulation should be considered a part of good care and not a luxury or the responsibility of families and friends. People with dementia who move into residential care may still appreciate going to a pub, supermarket or flea market, watching a rugby match or flower arranging. Such activities may take some organisation and pose logistical challenges but these are not insurmountable as demonstrated by homes which do provide such activities. Activities and social and cognitive stimulation should nevertheless be geared towards the interests of the residents which must first be ascertained.

1.3.3       Sexuality and relationships

This section addresses issues related to relationships between and involving people with dementia and the issue of sexuality. Relationships may be based on blood, marriage, kinship, friendship or emotional, psychological and sexual connections between people. Our emphasis is on the emotional, psychological and sexual aspects of relationships. Sexuality has been defined in a number of ways. Our definition covers sex (in terms of sexual activity, not just sexual intercourse), gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and, in the case of younger people with dementia, reproduction.

According to the World Association for Sexual Health (1999), sexual rights are fundamental and universal human rights “based on the inherent freedom, dignity, and equality of all human beings”. They further state that sexual rights must be recognised, promoted, respected, and defended by all societies through all means. Sexuality is further described as being dependent on the satisfaction of basic human needs such as contact, intimacy, emotional expression, pleasure, tenderness and love. It may involve a combination of biological and psychological or emotional influences and can also be influenced by cultural, legal, historical, social, economic, political, religious and spiritual factors.  The following declaration outlines a number of sexual rights which also have implications for relationships. They are therefore useful to bear in mind when considering an ethical approach to sexuality and relationships with regard to people with dementia.

 

 

 

World Association for Sexual Health: Declaration of Sexual Rights

 

1. The right to sexual freedom. Sexual freedom encompasses the possibility for individuals to express their full sexual potential. However, this excludes all forms of sexual coercion, exploitation and abuse at any time and situations in life.

2. The right to sexual autonomy, sexual integrity, and safety of the sexual body.This right involves the ability to make autonomous decisions about one's sexual life within a context of one's own personal and social ethics. It also encompasses control and enjoyment of our own bodies free from torture, mutilation and violence of any sort.

3. The right to sexual privacy.This involves the right for individual decisions and behaviours about intimacy as long as they do not intrude on the sexual rights of others.

4. The right to sexual equity.This refers to freedom from all forms of discrimination regardless of sex, gender, sexual orientation, age, race, social class, religion, or physical and emotional disability.

5. The right to sexual pleasure.Sexual pleasure, including autoeroticism, is a source of physical, psychological, intellectual and spiritual wellbeing.

6. The right to emotional sexual expression.Sexual expression is more than erotic pleasure or sexual acts. Individuals have a right to express their sexuality through communication, touch, emotional expression and love.

7. The right to sexually associate freely. This means the possibility to marry or not, to divorce, and to establish other types of responsible sexual associations.

8. The right to make free and responsible reproductive choices.This encompasses the right to decide whether or not to have children, the number and spacing of children, and the right to full access to the means of fertility regulation.

9. The right to sexual information based upon scientific inquiry. This right implies that sexual information should be generated through the process of unencumbered and yet scientifically ethical inquiry, and disseminated in appropriate ways at all societal levels.

10. The right to comprehensive sexuality education.This is a lifelong process from birth throughout the life cycle and should involve all social institutions.

11. The right to sexual health care.Sexual health care should be available for prevention and treatment of all sexual concerns, problems and disorders.

Adopted in Hong Kong at the 14th World Congress of Sexology, August 26, 1999

 

All of these recommendations could be applied to people with dementia although two recommendations are more limited in their applicability. Recommendation no.7, for example, addresses an issue which may be affected by guardianship measures in some countries. However, it is nevertheless valid in terms of this right not being denied solely on the grounds that a person has dementia. Recommendation no.8 is clearly targeted at people of reproductive age or capacity but would be applicable to younger women with dementia of child-bearing age and to men with dementia in terms of sharing responsibility for contraception when in relationships with younger women.

In the remainder of this section, we will look at what is already known from the literature about attitudes and practices with regard to the sexuality and relationships of people with dementia. This will be followed by a discussion about the relevant ethical issues.

Practices and attitudes towards sexuality and relationships
Taboo, stereotypes and stigma

Sex amongst older people is often considered taboo and stereotypes exist about older people and sex. Negative attitudes towards the sexuality of people with disabilities and mental disorders are also common. Bamford (2011) suggest that older people with dementia face the “double jeopardy” of being old and cognitively impaired. Consequently, sexual behaviour by older people, especially those who have dementia, is sometimes considered as pathological (i.e. involving, caused by, or linked to a physical or mental disease) and not a natural, healthy activity or interest. As people with Down’s syndrome tend to develop Alzheimer’s disease at a younger age, they may be labelled as having a disability. People with disabilities are also often inaccurately considered as being asexual beings (Milligan and Neufeldt, 2001). Older people, people with dementia and people with disabilities all risk being stereotyped as asexual. 

Stereotypes and myths about older people and sexuality are not only common amongst the general public but also in the healthcare domain (Benbow and Beeston, 2012), especially with regard to institutionalized older people (Glass et al., 1986). Older people are considered unattractive, uninterested in sex and sexually inactive (Mahieu, Van Elssen and Gastmans, 2011; Tabak and Shemesh-Kigli, 2006) but their own perceptions of the importance of sex vary. A qualitative study which involved indepth interviews with 21 men and 23 women aged between 50 and 92 had mixed findings. It was found, for example, that people who had no partner and did not expect to have one in the future placed no importance on sex, whereas those who did have a partner all attributed some importance to sex, many stating that it was very or extremely important (Gott and Hinchliff, 2003). However, it has been suggested that older people may collude in the stereotype of asexuality by passing as asexual and keeping their interest in and expression of sexuality secret (Nay, McAuliffe and Bauer, 2007). As stereotypes are based on the norms and values of society (Goffman, 1963) and represent a key component of stigma (Link and Phelan 2001; 2006) and as stigma serves to maintain power relations within society (Parker and Aggleton, 2003), a person who breaches social stereotypes risks being considered as deviant and being sanctioned. The expression of sexuality amongst older people and people with dementia is frequently discussed in terms of a problem or deviation from the norm. 

Sexuality, morality and social norms

Sexuality is a topic which is sometimes associated with religious beliefs and cultural norms which result in some practices being considered immoral, anti-social, shameful or offensive to others. Most cultures have unspoken rules and about which types and to what extent sexuality can be publicly exhibited, and in some cases only between certain categories of people. There are also contractual issues such as marriage and in some countries prostitution to be considered. A person’s religious or moral beliefs may mean that they consider sexual relationships between unmarried people, access to pornographic materials, extramarital sex or sex that this not for the purpose of procreation unacceptable, regardless of the mental capacity of the people concerned (Perlin, 1994). On the other hand, issues related to the sexuality or relationships may be considered differently if they involve people with dementia, perhaps resulting in greater tolerance (due to lack of perceived responsibility) or, on the contrary, in the desire to exert more control (e.g. in order to maintain respectability) (Archibold, 2002).

Sexuality and relationships within the LGBT community

Nowadays, people with dementia from the LGBT (lesbian, gay, bisexual and transgender) community are hopefully offered the same services and care opportunities as heterosexual or asexual people with dementia. However, there may sometimes be subtle forms of discrimination against them using these services and the services may not always be suited to their needs and wishes. Moreover, the LGBT community is not a homogenous group.

“Older LGBT people are not all the same, there are generational differences within this diverse group. Those who grew up pre gay liberation have endured a lifetime of having been vilified as 'sinners' by the church, 'criminals' in law, and pathologised by medicine. Consequently, this group experiences ageing differently and has distinct needs compared to the baby boomer cohort which is now approaching retirement. (…/…) For many, getting older means an increased fear of being "outed" after a lifetime of avoiding disclosure, or a fear of being sent back into the closet to avoid facing discrimination at a particularly vulnerable time in their lives.”(LGBT Health website, Australia, 2012)

An extensive literature review and study into the lives of older LGBT people in Ireland provides insight into many issues of relevance to older LGBT people with dementia. Examples include the fear of their LGBT identity and key partners not being recognised or respected, discrimination and being dependent on services provided by religious-based organisations (Higgins et al., 2011).

The freedom of older people from the LGBT community to decide whether or not to disclose their sexual identity may be threatened when they move into residential care. They may find themselves reluctantly “coming out” for the first time or yet again (Bamford, 2011). This may also be the case for those who continue to live in their own homes but require home care although this is less public. Bamford (2011) reports that many people from the LGBT community choose not to go into residential care, even at great personal cost, or assume heterosexual behaviour within care homes due to the fear associated with disclosure of their sexual identity. Such fears may sometimes be well founded. In some cases, staff, other residents, home care workers, family and acquaintances may be prejudiced, embarrassed or ignorant about LGBT relationships. This represents a triple jeopardy of being discriminated against or devalued based on being old, cognitively impaired and from the LGBT community.

It is important to respect people’s privacy, individuality and sexual identity, bearing in mind their past history of relationships. However, Bamford (2011) points out that this may sometimes be misleading. Some people may have hidden or repressed their homosexual tendencies for all or parts of their lives but their social control may weaken as a result of dementia, thus resulting in the expression of a different sexuality. Others may reassess what is important to them at that stage of their lives and consciously decide to “come out”. This raises the issue of personhood and which is the “true self”. Relatives may have difficulty accepting the current choices or lifestyle of the person with dementia even if the latter is clearly happy. The current sexual identity may be perceived as “wrong” based on their knowledge and understanding of the person’s history, preferences and values. Carers and relatives may fear that the person is being exploited or feel the need to protect their social dignity. They may also simply have difficulty coming to terms with a different image of the person with dementia based on their own prejudice or relationship to them. 

The knowledge and attitudes of professional carers

A review of 30 studies into nurses’ perceptions of sexuality in older people in residential care revealed the importance of their knowledge about sexuality of older people and their attitudes towards such sexuality amongst their residents (Mahieu, van Elssen and Gastmans, 2011). Overall attitudes were quite positive although less so with regard to erotic behaviour which tended to arouse feelings of shame and discomfort. There was also evidence of some degree of stereotyping about older people being incapable of leading a fulfilling sexual life. Most of the studies which had used quantitative methods reported positive attitudes and these were significantly correlated to educational level. Studies which had used qualitative methods (e.g. based on interviews on focus groups) did not report such positive attitudes. Mahieu et al. (2011) suggest that this may be partly due to the different methodologies and underlying paradigms which make comparison difficult. They also highlight studies which suggest that staff with a higher level of education have more permissive sexual attitudes.

Place of residence

Many issues linked to the sexuality and relationships of people with dementia apply in the context of people’s own homes as well as in residential or semi-residential care. However, in the formal care setting, it is possible that these issues take on a different significance as people do not have the privacy of their own home, they may have been distanced from existing relationships (which may or may not have been positive), they are expected to comply with the rules of the establishment and may be exposed to the interfering social and moral judgements of other people. At the same time, they are more or less obliged to spend the rest of their lives with other people, with whom they did not chose to live, but to whom they may become sentimentally attached and sexually attracted (Kuhn, 2002). Some situations may therefore arise in the formal care setting and be perceived as dilemmas which would not occur or be considered problematic in the private setting. Others (e.g. involving solitary activities, sexually inappropriate behaviour or advances towards outsiders), especially behaviour which seems to be “out of character” may be perceived as problematic wherever it occurs. It may also be the case that a sexual habit which was never a problem at home (such as cross dressing or paying for the services of an escort or paid sex worker in countries where this is legal) is not tolerated in long-term residential care homes.

Changes in relationships

Changes in relationships, in which one person has dementia, have been explored and found to be mainly negative but with some positive experiences. For example, a sample of 47 married partners of people with dementia in the UK completed an adapted version of the Marital Intimacy Scale which revealed that 22.5% of the couples were still having a sexual relationship and all were satisfied with it (Ballard et al., 1997). The remainder were no longer having a sexual relationship but 61.3% of those where happy with the situation, compared to 38.7% who were not. Amongst those who were dissatisfied with having no relationship, a significantly higher proportion were linked to a partner with vascular dementia who tended to be younger. Unfortunately, no further details were provided about the quality of the relationship.

However, another more recent study, explored both the sexual and the non-sexual nature of relationships by means of focus group discussions. 16 people with early stage dementia and their partners (aged between 56 and 77) revealed their concerns about role loss, dependency, role reversal (e.g. the relationship starting to resemble a parent/child relationship) and finding the right balance and respect despite changes in power relations (Braudy Harris, 2009). Positive perceptions of the impact of dementia on relationships included personal growth and the reconfirmation of the couple’s marital commitment. With regard to sexuality and intimacy, perceptions were varied. A few couples felt that dementia had not had any impact on their intimate relationship and some described their relationship as having become more platonic but deeper. They felt that they had less physical, sexual contact but that they had grown closer and become more intimate at other levels. Some felt that they had limited feelings of intimacy and were less satisfied with their sexual relationship. This was associated with frustration, anger and disappointment.

The above studies should not be considered as representative of the relationships of all people with dementia, especially as they only relate to heterosexual, marital relationships. However, they show how one partner having dementia can affect relationships in different ways and that the sexual and non-sexual sides of the relationship are equally important to consider. 

Within the context of residential care, staff are usually encouraged to have a professional relationship towards residents but this does not mean being cold and detached. Varying degrees of friendship and caring may develop. Sometimes, tasks involving intimate care can be misinterpreted or evoke comments or actions which are not in keeping with the professional nature of the act. This can be difficult to manage and staff do not always receive appropriate support from fellow staff or management (Archibold, 2002).

1.3.3.1      Ethical issues linked to sexuality and relationships

A number of ethical issues were addressed in a review of the literature on this topic carried out by Mahieu and Gastmans (2012). The review covers 25 articles published in the last 30 years in English, French, German or Dutch. Mahieu and Gastmans (2012) detected an imbalance in the literature with greater attention being paid to the bioethical principles of Beauchamp and Childress (namely, respect for autonomy, beneficence, nonmaleficence and justice) at the expense of care-based ethical arguments. Moreover, the authors conclude that “there is a pressing need for a better defined, more fundamental philosophical-ethical analysis of the values at stake” (p.346). They propose a broader ethical framework to address sexuality amongst older people which is equally applicable to people with dementia. In addition to the bioethical principles, their framework includes ethical care-orientated arguments reflecting care, dignity, vulnerability, singularity, historicity and relationality. In the context of residential care, they also highlight the need to address sexuality at three levels:

  • The individual level: how to deal with the sexual behaviour of the resident.
  • The relational level: how staff should deal with the sexuality of the resident (question of attitudes)
  • The institutional level: how should the institution create an atmosphere in which sexuality can be addressed.

With biomedical ethics, respect for autonomy is a predominating factor. It is often considered that if people are able to consent, their freedom must be respected but many people with dementia lack this ability. Also, there are different issues at stake with regard to a proposed treatment compared to having an emotional, sexual or platonic relationship with somebody. The desire for companionship, intimacy, love and meaning to life cannot be evaluated in the same way as consent to medical treatment. It is therefore problematic to transpose the biomedical paradigm onto a completely unrelated issue. Trying to do so, leads to the medicalization of daily life but sexuality and relationships are not medical problems. Unfortunately, the care approach is not well developed.

In the following sections, issues related to the various bioethical and care principles are discussed and some of the associated ethical issues raised.

Respect for autonomy
Informed consent

The principle of respect for autonomy covers the right to decide for oneself about relationships and sexuality. Private sexual relations between adults rarely involve a contractual, signed agreement but are always considered as necessitating the consent of both parties and the condition that neither was coerced. Otherwise, it would be considered as rape or abuse.

The capacity to consent is task specific. People do not have an overall capacity to consent covering everything from driving cars, making a will and undergoing surgery to having a relationship. However, there is a risk of underestimating the capacity of people with dementia to have sexual relationships if presumptions are made about their capacity based on their capacities in other areas of life. As Kuhn (2002) points out, “A resident may perform poorly on a mental status test but his or her preference for a special friend or lover may be quite evident” (p.167), adding that attempting to determine an “all or nothing” global competence is not likely to be a useful approach. Surely, evidence that a person with dementia has formed an affective tie to another person should not be ignored when considering the issue of consent to a relationship with that person, even if affective ties are not considered a necessary criterion to engage in such relationships.

In most countries, there is a presumption that a person has capacity unless it has been proven otherwise and consequently, there are criteria or guidelines in specific domains to determine whether a person has such capacity. With relationships, the situation is perhaps somewhat different. People do not always make an initial or calculated decision to start a relationship or friendship. Moreover, it could be argued that becoming emotionally attached to someone does not require a particular capacity. On the other hand, people with dementia may be vulnerable to financial or other abuse in the context of relationships.

Lichtenberg and Stzepek (1990) proposed a set of guidelines to assess whether people with dementia living in residential care settings should be allowed to engage in sexual relationships. The authors emphasise the potential benefits of sexual activity and state that informed consent is generally understood to require three conditions, namely voluntary participation, mental competence and awareness of the risks and benefits. Their guidelines, address three issues which are not quite the same, namely awareness of the relationship, the ability to avoid exploitation and awareness of potential risks.

Awareness of the relationship involves awareness of who is initiating the sexual contact and the absence of any delusions or mistaken identity (e.g. mistaking the other person for their spouse or partner) but also having the ability to state what level of sexual intimacy they would be comfortable with.

The ability to avoid exploitation focuses on two factors. The first is whether behaviour is consistent with formerly held beliefs and values. This raises questions about the perceived authenticity of personhood of people with dementia which will be addressed below. The second factor is whether the person with dementia has the capacity to say no to any unwelcome sexual contact.

The awareness of potential risks is assessed on the basis of the person’s realisation that the relationship may be limited in time and whether they can describe how they would react when the relationship ends. This is based on the fact that the study was set in a temporary unit and is not very helpful to other settings. 

These factors are perhaps useful to consider but overemphasise negative issues. They do not give equal importance to the potential benefits of possible sexual relationships. Also, they require consistency with past behaviour and values which may nevertheless change. The assessment of the person’s ability to say “no” does not take sufficient account of the kind of subtle psychological coercion which might be exerted on people with dementia either by staff, residents or other people. People with dementia may be particularly vulnerable to sexual abuse if they are dependent on the people caring for them and due to the unequal power relations between staff and residents in nursing homes.

This approach seems to reflect a medicalization of the sexuality of people with dementia. However, Lichtenberg and Strzepek (1990) argue in favour of adopting caring as an ethical approach based on the work of Nel Noddings (1984) who reportedly argued that:

“Caring is based on the receptiveness, relatedness, and responsiveness of the one caring to the one cared for and that in order to truly care, one must give appropriate attention and credit to the affective foundation of existence.” (Lichtenberg and Strzepek, 1990, p. 117).

Authenticity of personhood

In the guidelines developed by Lichtenberg and Strzepek (1990), assessment of the ability to avoid exploitation was linked to a consideration of whether the person’s behaviour was consistent with formerly held beliefs and values. The issue is not whether a person with dementia can or should change. Rather, it is about the authenticity of personhood. In other words, a person whose behaviour changes to such an extent that it no longer seems to be in keeping with the values and beliefs they formerly held, may seem to have become a different person. Clearly, this is not the case and people change throughout the course of their lives. However, in dementia, the change can sometimes seem so radical that some people make a distinction between the “then” self and the “now” self. This is linked to the importance attached to awareness of one’s own past (and to one’s values and beliefs which develop throughout one’s life) as opposed to “living in the moment”.

According to Mahieu and Gastmans (2012), theorists are divided on this issue. Some emphasise the importance of the “then” self, arguing that the values and beliefs held in the past are important, particularly the “critical interests” which made life meaningful as they define the person’s identity. Consequently, they should be taken into account when deciding on the appropriateness of current sexual behaviour and not the “experiential interests” linked to living in the moment. If the sexual behaviour is not in keeping with past values and beliefs, it may be considered offensive to that person’s own dignity (Berger, 2000). Other theorists, such as Tenenbaum (2009), emphasize the need to balance critical and experiential interests, arguing, nevertheless, that the value of an intimate relationship may be greater than the threat it poses to critical interests. Post (2001), on the other hand, is opposed to the strict bifurcation of the self in the “then” self and the “now” self. He argues that it is nonsense to claim a radical discontinuity between the past and current selves and that up to the advanced or terminal stages, a person may have moments in which they recollect former relationships and may experience intense shame or guilt about current relationships.

Beneficence

Older people, including those with dementia who still engage in sexual intercourse, have sexual feelings and appreciate intimacy contrary to stereotypes that they are incapable or not interested (Braudy Harris, 2009; Kaplan, 1990; Skoog, 1996).  Several studies suggest that sexual activity is proven to have a positive psychological and physical impact on the lives of people living in residential care (Mahieu and Gastmans, 2012). There are therefore sufficient grounds to support beneficence as an ethical argument in favour of promoting rather than opposing sexual activity and relationships involving people with dementia. However, at the individual level, concerns are often expressed as to whether sexual activity or a relationship is completely beneficial and whether the benefits outweigh possible harm. This raises the issue of nonmaleficence which is addressed later.

Intimacy and touch in non-sexual relationships

According to Bouman (2003), the need for human affection, intimacy and touch remains important even for people with advanced dementia who have become less interested in sexual activity. Intimacy and touch may also occur within the context of care and is closely linked to both privacy and beneficence. It may be considered as contributing to a person’s sense of well-being and therefore as beneficial, or perhaps negatively as an intrusion into somebody’s personal space or passing the boundaries of their comfort zone insofar as physical contact is concerned. Mattiasson and Hemberg (1998) explored intimacy in the care context. They suggest that touch is closely linked to care in that it can communicate understanding and empathy, give comfort and ease pain or be linked to treatment and care such as bathing a person or giving an injection. In its expressive form, it may alternatively be spontaneous, affective and not linked to any necessary task. Examples include stroking a person’s cheek, putting an arm around somebody or holding a person’s hand. The same act may be perceived and interpreted differently by different people and may be influenced by various factors such as the age and sex of the people involved. Some people with dementia may appreciate such contact and for them it may correspond to a need for intimacy in the form of genuine human contact. This may correspond to a psychological and social need as well as the need for physical contact. Others may perceive certain acts, involving touch as patronizing, infantilisation, disrespectful or irritating. People may experience touch and exposure of their body to others as shameful and humiliating. In such cases, they may feel threatened and behave in a defensive manner.

Different people have different attitudes towards trust and those of the carers might not necessarily correspond to those of the people they are caring for. Huss (1977) notes that the boundaries for touch vary between different cultures and that touch is often equated with sex unless it is clear that there is no connection between the two.

However, as dementia progresses, physical contact with the body by carers may become increasingly necessary. Mattiasson and Hemberg (1998) emphasise the importance of getting to know the person and how they feel about touch but also of being aware of the messages being conveyed though touch and intimacy. They suggest that it is when a person feels that they are being treated as an object of care rather than as a valued person that there is a risk of invasion of their personal privacy. An American study involving a random sample of 100 older nursing home residents revealed that touch was considered as positive when it was appropriate to the situation, did not impose greater intimacy than desired by the residents and was not considered as condescending (Hollinger and Buschmann, 1993). Negative touch was associated with procedures and ways which were considered as intimate and not corresponding to the needs of the individual.

Nonmaleficence
The avoidance of harm to the person with dementia

The major concern, with regard to nonmaleficence, is whether sexual activity or behaviour would cause harm to a particular person with dementia. Different types of harm are possible. For example, as people with dementia are potentially vulnerable to abuse and exploitation, there may be issues linked to the intentions of the partner in the activity or relationship (which might not necessarily be the spouse or stable partner of the person with dementia). Even if these are not “honourable” (e.g. the person is profiting from the person with dementia in some way), the person with dementia might not be considered as at risk of harm if they understand and accept those motives or feel that they are nevertheless benefiting in some way.

Everett (2008) provides an interesting case study of a situation involving a 75-year-old man living in a care home who regularly pays for the services of a 60-year-old escort. His adult children feel that this is harmful to his long-term financial security and not in keeping with his own past morals and religion. However, it is clear that their own values and concerns are involved as they also feel that the money being spent on the escort is coming out of their “rightful” inheritance and that the father’s “sexual antics” are disrespectful to their deceased mother. The nurses in the home have concerns about his exposure to sexually transmitted diseases and for some, it offends their religious values. They are also concerned about not fulfilling their professional responsibility to protect all residents from harm. There are therefore arguments in favour of interfering in the situation but the man concerned may perceive potential benefit and potential harm differently. His perceptions are important when assessing his capacity but also whether the potential harm outweighs the benefits to him.

The risks of harm depend very much on how the man understands the impact of the expense on his long-term financial stability (including the continued ability to pay for the same standard of care as that he is currently receiving), his current beliefs and values, how he thinks his late wife would have felt about it, how he valued the relationship with her, how he values the relationship with the escort and whether he is taking precautions or can understand and assess the risks of contracting a sexually transmitted disease.

The avoidance of harm to people with dementia in relation to sexuality might also arise from a failure to respect their wish to abstain from sexual activities or relationships. Due to the age gap between most carers and people with dementia, staff may have more liberal views about older sexuality and relationships (including remarrying) than the people with dementia themselves. This is not problematic provided that staff do not inadvertently push their opinions and values onto people with dementia, thereby raising issues and creating dilemmas which would not otherwise occur (Mahieu et al., 2011). This may also create conflict if their views contradict those of family carers who may fear that the person with dementia is being unduly influenced. Unlike professional carers, family carers are part of the complex web of relationships which link them to the person with dementia and which may result in their own views being affected by loyalties, emotional ties and even greed. 

The avoidance of harm or offence to others

Whilst the focus of the discussion must be on the interests of the person concerned, the case study highlights the importance of also considering harm to others and offence to others. According to Everett (2008), significant harm to others, if proven, could be considered as justifiable grounds for interference but this would not mean that the man’s needs should be totally ignored. With regard to offence to others, such offence would also have to be considered as serious. In both cases, it is the seriousness of the harm or offence to others which must be proven. Even if proven, it would have to be shown that such serious harm or offence to others was greater than the reasonableness of the actions of the person allegedly causing such harm or offence. It is reasonable for a person with dementia, whether in their own home or in a nursing home, to have a relationship with or without sex with another person. It would be discriminatory to suggest that in principle (i.e. based on age or having dementia), they should not.

With regard to offence to others, some staff or residents in nursing homes might argue that certain sexual behaviour deeply offends them due to their strong religious beliefs. According to Everett, the reasonableness of sexual behaviour versus the seriousness of the offence to others should not be evaluated on the basis of standards set by a minority of people (either those who are for or those who are against). He states,

“Rather the reasonable person on the street, not the fanatic or devotee of pornography, should be used as the standard for determining whether a lonely, widowed individual living in residential care, who is seeking companionship in the form of a sexual relationship, is an offence to others that is serious enough to attract regulation or restriction”  (Everett, 2008, p.93).

A problem still remains if the people who are opposed to the relationship provide care for the person concerned. Staff should not have to compromise their own ethical values.  Everett (2008) suggests that in the context of residential care they be excused from providing care to that person. It is not clear whether this would be possible in all nursing homes. In the private domain, carers may not have that option.

Offence to others may also be an issue in the case of inappropriate sexual behaviour such as masturbation, unwelcome advances, self-exposure and sexualised comments, including swearing. This is not actually very common and there may be differences of opinion as to what constitutes inappropriate behaviour (Higgins et al., 2004). When this does occur, it raises issues about individuality, self-expression, privacy, beneficence, dignity and wellbeing in relation to the presumed “offender”. However, within the relationship of care, the wellbeing of staff and other residents must be considered, along with a consideration of possible contributing factors which might cast a different light on the behaviour in question and help reduce its occurrence.  On the other hand, in terms of equity, there should be similar expectations and house rules about what is, broadly speaking, acceptable behaviour within the context of communal living arrangements of people with and without dementia, albeit with a greater degree of understanding that some behaviour may not be intentionally disruptive or offensive in the case of the former.

Some of the behaviour discussed so far would not only be unethical but in some cases illegal (e.g. if carried out with deliberate intention to offend or cause harm or in a public place). People with dementia living in residential care are sometimes in a public area for the major part of their lives even though that place is also their home. Certain sexual behaviour, such as sadistic practices towards non-consenting adults, or any form of sexual act with children, should not be condoned irrespective of the level of dementia.

Risk

The principle of nonmaleficence is closely linked to perceptions of risk. In most cases, the main concern is about potential harm which means harm which may or may not occur and which has varying levels of severity. As it has not occurred, it can only be estimated. The level of the potential harm is also important when deciding what an acceptable risk is. According to the principle of proportionality, if the harm potential is very high, it is necessary to be cautious but if it is low or non-existent, greater risk can be tolerated. The relative importance of safety versus autonomy may be influenced by whether the person deciding is personally responsible for the person with dementia (Landau et al., 2010). Also, when someone has to decide what an acceptable risk is for another person, especially for someone who is potentially vulnerable, the level of risk tolerated is likely to be lower than it would be if they were deciding for themselves (Nuffield Council on Bioethics, 2009). Determining what is a high or low risk depends to some extent of each person’s point of view. According to Lupton (2005), risk is socially constructed and value-laden. Consequently, there will be differences of opinion on this matter. On the other hand, people are entitled to take risks provided that they understand them and do not endanger others. This should also apply to people with dementia. The Mental Welfare Commission for Scotland (2006) considers that life is never risk free and that a certain degree of risk taking is part of good care.

The degree of harm to which a person is exposed as a result of a relationship may be linked to other factors which are due to the way that a nursing home or care is organised. Examples include the transfer of residents from one home or wing to another based on the wishes of relatives or guardians, lack of transport facilities to enable socialising out of the home or of the possibility to obtain condoms discreetly.

Justice

According to the principle of justice, everybody in society should have the opportunity to take the same risks and to enjoy the same benefits. This reflects an ideal of equal opportunity and non-discrimination. Rules and practices which prevent people in residential care from using private areas in their own living areas to engage in sexual activities is a form of discrimination (Everett (2008). Discrimination is usually linked to power as the people who discriminate or allow discrimination to happen have the power to do so and those who lack power cannot prevent it. It is also linked to stereotyping as stereotypes of older people (including those with dementia) not being interested in sex or able to have a relationship make it easier to enforce situations in which they have no opportunity to do so. There are other groups in society which are expected to abstain from sexual relationships such as priests, nuns and monks in the Catholic Church. Although celibacy is imposed on them by the Church, they accept that restriction based on their beliefs and their choice to assume a particular role within the Church. This is not the same with people with dementia.

Sometimes, discrimination can be quite subtle. It may seem as though nobody is opposing a sexual relationship but an examination of the situation would reveal that there is no possibility for privacy (i.e. to be alone and not have everybody knowing what everybody else is doing). The environment may not be appropriate for sexual encounters or to share quiet moments with a friend (e.g. strong lighting, no curtains, single beds, no means of locking the door, nowhere to sit together, food and drink not permitted in the room, and perhaps worst of all, having a shared room). Slipping off unnoticed may be impossible in living arrangements where people sit together in a communal room all day long and eat together, and where it is the duty of staff to know where each resident is. In other words, it may be difficult to keep a private matter private and the fear of ridicule may make some people hesitant to express their feelings and sexuality publicly. Allowing this situation to persist could be deemed as discrimination and a subtle means of control which prevents people with dementia in residential care from having relationships.  

The following sections address concepts which are relevant to the care ethics approach described by Mahieu and Gastmans (2012).

Privacy

Expressing ones sexuality and engaging in relationships are linked to autonomy in that people are making decisions about what they want to do and with whom. This may be accompanied by the desire to have privacy which is also an autonomous decision. However, privacy is also closely related to the care ethics as the desire for privacy is closely linked to individuality and one’s relationship to others.

Based on a review of the literature Mahieu and Gastmans (2012) highlight three forms of privacy which are particularly important in residential care settings, but which might also apply to people living at home with other people. First, there is physical privacy (i.e. being left alone, not having to see or be seen by others). Second, there is the privacy of information which means that other people should not be given information about a person without their permission. Third, there is the privacy of association.

In residential care settings, people have less possibility for physical privacy than in their own homes. Even if they have their own room, they may be obliged to spend parts of the day in communal areas, or staff may have access to their rooms. In some establishments, it may be possible to lock doors, but in some the only private space may be a cupboard or locker for possessions. This will be discussed in section 3. Even in people’s own homes, people with dementia may find that relatives do not respect their need for privacy and therefore lack a place where they can engage in sexual activities. In both settings, people with dementia may lack the opportunity to have or acquire sexual materials due to lack of direct access to the post, computers or places to put the materials once acquired. There is also the privacy which is directly linked to the body and intimacy. People with dementia may eventually need help with acts which were formerly accomplished alone and in private (e.g. having a bath, getting dressed and going to the toilet). This may result in exposure of the body to other people and in some cases physical touch by relative strangers. Mattiasson and Hemberg (1998) suggest that the challenge for carers is to combine the provision of necessary care with respect for the right of the person with dementia to privacy and rightful wish not to be forced into a greater degree of intimacy than the care situation necessitates.

With regard to the privacy of information (i.e. confidentiality), the treatment and care of people with dementia is sometimes discussed in their presence but to other people as if they were not present and could be overheard by yet others who do not have sufficient privacy to be able to avoid hearing it. When the matters discussed relate to sexuality and relationships, this represents a substantial threat to the well-being of the people concerned. Older people in care homes often fear ridicule or infantilisation in connection with their sex lives and the relationships that they form with other people. In some cases, information may be revealed due to a failure to respect the principle of privacy, which a person has always deliberately kept secret from others but which may be difficult to hide in a nursing homes with limited opportunities for privacy. This particularly applies to people with gay, lesbian, transgender and bisexual identities, people having extramarital relationships and people who have always led very private lives. Breaching the right to informational privacy may lead to people being “outed” and this may have an impact on the way that they are subsequently treated by others but also lead to emotional stress and the fear of discrimination. Anticipated stigmatisation can be just as damaging as actual discrimination (Thornicroft,et al., 2009).

The lack of physical privacy and informational privacy is quite common in residential care settings even amongst people who do not have dementia. A lady with multiple sclerosis stated,

“What I really miss here is my intimate sphere. There are constantly people walking to and fro and listening to conversations which have nothing to do with them. I haven’t once had the opportunity to cuddle or be intimate with my partner, which is actually a human right.”(translated from German, Weidner, 2012, p.14)

In some situations, private information about sexuality and relationships is disclosed to relatives. This might, for example include information about alleged sexually inappropriate behaviour towards staff or other residents, or the expression of sexuality in an inappropriate place. However, such disclosure fails to respect the right of the person with dementia to privacy. Such information could be disturbing to the relatives as well as to the person with dementia. In some families, sexuality is a taboo subject and relationships a private matter. In addition, knowledge about the sexual behaviour or relationships of a person with dementia may lead to a change in the way that people perceive that person, which could have a negative impact on their self-esteem and social dignity.

The issue with regard to disclosing such information to family members is not simply one of them knowing intimate details, in most cases, about their parent or partner. The disclosure of such information may, in addition, be linked to an expectation that the relatives should intervene or consent to certain approaches to manage “the problem”. In the case of long-term relationships, some staff may feel that they have a moral duty to inform the relative without dementia that their partner is having a relationship with another person. There are differences of opinion in the literature on this matter (Mahieu and Gastmans, (2012). Some people argue that there are no justifiable grounds to disclose such private information to relatives and that it should only be possible to do so if informed consent has been obtained. Others argue that it would be justifiable to share such details with relatives if the risk for potential harm outweighed the person’s right to privacy and confidentiality.

Privacy of association involves the right to choose friends, relationships and sexual partners. Often, this necessitates a certain degree of physical privacy and may be adversely affected by a lack of privacy of information. Difficulties may arise if other people have difficulty accepting that the person with dementia associates with a particular person or that they form any relationship at all. Objections may also be based on the type of relationship (e.g. a heterosexual person who, apparently for the first time, forms an intimate, sexual relationship with a person of the same sex, orvice versa in the case of gay couples).

Dignity

Dignity is linked in some way to most other ethical principles. In the context of sexuality, it is sometimes argued, especially by close relatives and friends, that certain behaviour is undignified as it is not in keeping with the person’s values and beliefs or is offensive to others and that this may affect the way other people value the person with dementia. On the other hand, it could be argued that respecting the fundamental human dignity of each person means allowing them to express their sexuality as this is a core part of their identity. It is possible that concerns about dignity involve some degree of projection whereby the person who is concerned about dignity projects their own feelings of shame and discomfort onto the person with dementia, when in fact the person with dementia is not ashamed or embarrassed and this is not necessarily due to a lack of awareness.

There may also be a link to vulnerability in that assumptions about behaviour resulting in loss of dignity are linked to beliefs that people with dementia are vulnerable and in this case need protecting from themselves. As people with dementia have varying degrees of capacity in numerous domains, they cannot be considered in blanket fashion (i.e. in a generalised way) as being vulnerable but only as potentially vulnerable. Consequently, even if certain expressions of sexuality or emotional involvement with others seem undignified, they must be considered from the perspective of the people with dementia expressing or experiencing them. There is a risk that perceived threats to dignity are evaluated on the basis of stereotypes, values, beliefs and sensitivities of other people.

There is a certain dignity linked to being considered an adult. Adult status is formally acknowledged in law in that minimum ages are set for the legal fulfilment of certain tasks such as voting, marrying, making a will and engaging in sex. The importance of being considered an adult is reflected in the decision made in Germany in 1992 to replace the practice of declaring people “entmündigt” with a more flexible system of guardianship (Bundesministerium der Justiz, 1996). According to Schönhof (2010), the term “entmündigt” has connotations of the loss of fundamental and basic rights which are acquired with adulthood and therefore has negative connotations. A person with dementia who is denied the right or opportunity to express their sexuality and have relationships or who must obtain the permission of others may feel infantilized and this may affect their dignity and self-esteem.

There are different communication patterns within families. Some speak openly about sexual matters but for many, these are private issues between couples and not to be shared with siblings or adult children. The discussion of intimate matters such as sexuality with the members of the family of a person with dementia could be considered as failing to respect the dignity of the person with dementia with regard to their position in the family.

Vulnerability

In geriatric nursing homes, elderly people are potentially vulnerable to abuse due to unequal power relations between staff and residents, unclear physical personal boundaries due to the need for assistance with intimate care, lack of privacy and in some cases cognitive difficulties. People with mental disabilities are also reportedly vulnerable to sexual exploitation and abuse (Schwab, 1992). People with dementia may also be vulnerable to financial and emotional abuse in the context of relationships. In the case of younger people with dementia, issues related to unwanted pregnancy and contraception must be considered (van Dyke, McBrien and Mattheis, 1995). Many people with dementia will have passed the age of reproduction but there are also women of child-bearing age who have dementia and some older men with dementia who are still fertile. All people with dementia who are sexually active are equally at risk of sexually transmitted diseases. However, there is a risk of over-emphasising vulnerability, possible abuse and victimization, thereby overlooking other important issues such as sexual pleasure, wellbeing and quality of life.

Singularity

The principle of singularity focuses on the variety and uniqueness of each person (Mahieu and Gastmans, 2012). Everyone is different and one of the ways that such singularity is reflected is through each person’s expression of their sexuality. People have different ways of managing their needs and desires. Disease affects each person differently and this may have a further impact on their sexuality and relationships. When talking about the sexuality of people with dementia, we have to bear in mind that it is different for each person. Each person with dementia, each relationship and each situation in which the relationship or act occurs, is different.

Historicity

Historicity reflects the historical dimension of human existence (Mahieu and Gastmans, 2012). It is about the importance of a person’s life history, of knowing something about their background, what kind of a life they have led, how it has unfolded, what they have done, where they have been and things that have happened to them which were meaningful. An important aspect of each person’s history might be their profession, if they had one, and their family. The nature of their relationships is also relevant to the ethical principle of relationality.

Relationality

Respecting relationality involves finding out what was and is important to the person with dementia with regard to relationships (Mahieu and Gastmans, 2012). This might include the importance of trusted relationships for that person’s wellbeing, the nature of the relationships they have had in the past, the nature of current relationships (e.g. with spouses, partners and children), the importance of friendship and social exchanges and whether the interests of the person with dementia and potential partners or friends coincide. In keeping with the broader definition of autonomy proposed by the Nuffield Council on Bioethics (2009), enabling and fostering relationships is one way to promote autonomy. They further suggest that such autonomy in the context of relationships should not be understood in terms of balancing the autonomy of one person over that of another as people usually take into account what other people want when deciding what they want. This is therefore part of what is important to most people with regard to relationships.

Many people enter into residential care alone, leaving their partners behind or have no partner but the lifestyle they adopt as a single person living together with other people in residential care is not something they are familiar with or actively seek. It is therefore important to understand their experience of and attitudes towards relationships with other people.

Putting a care principles approach into practice is complicated. It is much easier to apply the biomedical approach but this is not as satisfactory in terms of outcome for the person (Mahieu and Gastmans, 2012). It takes a lot of thought to get into dialogue, to find out about the person and their history, their experience of and attitudes towards relationships and what makes them a unique individual. There is also a need to talk about sexuality and relationship and to take these issues seriously. Uncontrolled sexual behaviour is often the result of neglecting that issue with the result that it is expressed in an uncontrolled way. Sometimes by talking about it, there is already a solution. It may be an issue of loneliness and lack of intimacy.

1.3.4       Recommendations on the freedom to act according to individual attitudes, values and lifestyles

1.3.4.1      Living in the community versus social segregation

A range of living arrangements, support and services should be developed which are suited to the needs and preferences of people with dementia wishing to continue living in their own homes or in the community.

The possibility for people with dementia to continue living in the community should not be limited to their ability to adapt to existing structures, services and support which are not suited to their needs and preferences.

The use of assistive technology to enable people with dementia to continue living in the community should be further developed.

The right of people with dementia to access and use assistive technology at the time it would be most beneficial to them should be ensured.

1.3.4.2      Practices within residential and semi-residential care settings

Care establishments

Care establishments should strive to recreate the atmosphere through design, procedures and attitudes which is likely to make people feel at home.

Care establishments should respect and reflect the cultural diversity of the residents.

People with dementia living in or attending such establishments (referred to hereafter as residents) should be considered and treated as residents with rights.

The individuality of residents should be respected and as far as possible reflected in the way that they are treated.

Practices and ways of speaking to residents which are potentially demeaning, belittling, humiliating or infantilizing should be forbidden.

Healthcare professionals, auxiliary staff and managers should try to adapt the services and support they provide to the needs and wishes of the residents (as a group and, as far as possible, individually).

Opportunities for residents to smoke, be accompanied to the toilet or outside, or have a cup of tea/coffee should not be limited to set times of the day or to organised “rounds” unless there are justifiable reasons for this.  

Any possessions which are personally valued by residents should, as far as possible, be recorded or labelled so as to avoid theft, confusion and misappropriation.

Any loss of possessions should be dealt with appropriately by the management of the establishment.

Care establishments should strive to provide opportunities for residents to participate in social life and maintain their habits and interests as far as possible.

Residents (people with dementia)

Residents should be provided with support and encouragement to do things for themselves if they are able and willing.

Residents should be permitted, within reason, to access light refreshments (e.g. a cup of tea or coffee and biscuits) at any time of the day or night unless there is a medical reason against this.

Residents should have the right to at least a minimum time outside in fresh air each day (weather permitting).

Residents should wear their own clothes and not be expected or obliged to share clothes from a common wardrobe with other residents.

Residents should have a private place (e.g. a locker or cupboard) which can be locked and the key or a double of the key entrusted to a member of staff if the person so wishes.

Residents should be encouraged to inform care staff of any exchanges of possessions which have been recorded or labelled so as to avoid future misunderstandings.

Residents should be allowed, if they so wish, to assist with simple tasks linked to the daily maintenance and running of the home.

Residents should, as far as possible, be involved in decisions relating to changes in routines or their living environment.

1.3.4.3      Sexuality and relationships

General

Informal and professional carers of people with dementia should be encouraged to explore their attitudes, values and beliefs about the sexuality of older people and people with dementia.

Negative stereotypes about the sexuality of older people and people with dementia should be challenged.

People with dementia should not automatically be considered as vulnerable to sexual or financial exploitation in the context of sexual or platonic relationships and/or marriage but the possibility of this occurring should not be overlooked.

Any cases of suspected abuse should be investigated and action taken if necessary.

Sexuality and relationship choices which are not consistent with the lifestyle and values of the person in the past should not be considered as conclusive evidence of undue pressure, incapacity or a threat to the person’s dignity.

Care plans should address the sexual needs of people with dementia whether at home or in residential care.

Issues related to sexuality and relationships should be broached with sensitivity.

People with dementia should not be put under pressure to discuss their sexuality.

Assessments as to whether a person with dementia can consent to a sexual relationship should not be limited to capacity and nonmaleficence but should cover issues such as individuality, relationality and emotional and physical wellbeing.

All sexual identities (e.g. asexual, LGBT or heterosexual) and related practices should be accepted and promoted provided that they are in compliance with the law. 

People with dementia should have the same right to enter into new LGBT relationships, continue existing LGBT relationships, engage in any sexual practices within the context of a relationship or otherwise, as do people who do not have dementia.

People with dementia should have the same right as other people to expose themselves to risk in the context of a relationship and to suffer the consequences.

Nobody should have the right to interfere in the relationship of a person with dementia unless there is a serious risk or evidence of abuse.

Care establishments

Establishments should have a clear, open and accepting policy towards sexuality and relationships involving residents with dementia.

Establishments should provide residents with appropriate and private areas in which to pursue relationships and express their sexuality.

Establishments should respect the right of residents to keep information about their sexuality and relationships private.

The sexuality and relationships of residents should be considered as care-related issues and not as problems.

Healthcare professionals should not impose their beliefs, morality and attitudes towards sexuality and relationships on residents in their care.

Care staff and other healthcare professionals should not be permitted to tease, ridicule or mock residents about their relationships or sexual activities.

Alleged offensive or inappropriate sexual behaviour should be considered on the basis of what a “reasonable person” might find offensive and not according to the religious or moral views of individual staff members.

Healthcare professionals should have access to a contact person from whom they can seek support and advice regarding the sexuality and relationships of residents with dementia and in the case of difficulties dealing with behaviour they find sexually offensive or inappropriate.

The needs, wishes and rights of residents to express their sexuality and form relationships should be given priority over those of carers and relatives.

Care staff should not automatically intervene to stop relationships or sexual activity which occur between a resident with dementia and someone who is not their long-term partner. 

Residents should be supported in their attempts to manage their physical appearance and to engage in courtship practices.

Residents should have discreet access to methods of contraception and protection against sexually transmitted diseases, and to sexual, erotic or pornographic materials, other than images and items which are forbidden by law.

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Report "The ethical issues linked to restrictions of freedowm of people with dementia" as part of Alzheimer Europe's 2011 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received frm Fondation Médéric Alzheimer Europe and the Alzheimer Europe Foundation for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer
 
 

Options