What do we need from service providers and policy makers?
2 What do we need from service providers and policy makers?
Guidelines for people with dementia and continence problems living at home are unlikely to be effective in the absence of a coordinated framework and health and social care professionals with an understanding of both conditions. All too often, the carers of people with dementia and continence problems living at home are expected to provide continence care even though they have received no training, may have difficulty coping with such intimate care and may have additional family and professional responsibilities. Service providers, such as the healthcare system, municipalities and healthcare insurance companies (depending on national healthcare funding systems), should therefore ensure that people with dementia and their carers where appropriate:
- have access to information about dementia (e.g. causes, symptoms, possible future difficulties with continence) and support and training in the period following diagnosis to help ensure that the person with dementia can be cared for in the community for as long as possible,
- have access to the full range of continence care options (e.g. containment products, care, training, medication and surgery) to enable them to live at home independently for as long as possible and with dignity,
- are put in contact with health and social care professionals with joint expertise in dementia and continence care,
- are aware of the options available to them to help deal with continence problems,
- are not left with sole responsibility for care that they are not willing or able to provide (especially intimate care provided by carers),
- are not lacking necessary products to prevent and contain incontinence due to their lack of economic means.
In relation to health and social care professionals and the framework of continence care, service providers should:
- ensure the provision of integrated social and health care for continence problems which is adapted to the specific needs and wishes of people with dementia living at home,
- involve incontinence nurses/advisors and nurses who are specialised in continence care in the care of people with dementia and continence problems living at home,
- ensure that the framework and payment system for consultations, assessment and the provision of support, care and treatment for incontinence allow sufficient time to address the additional needs of people with dementia,
- provide appropriate training to ensure that there is a sufficient number of health and social care professionals with joint expertise in dementia and continence care,
- increase funding to carry out studies about incontinence in people with dementia with a specific focus on prevalence, incidence, the impact on people with dementia and their carers, community perceptions, evaluation of existing continence and community services and effectiveness of innovative treatment modalities.
In relation to the wider social context, service providers should:
- raise awareness about dementia and continence problems amongst people living at home, and address the stigma of both conditions,
- take the necessary measures to enable people with dementia and continence problems to move about freely within the community,
- enhance dementia-friendly environments, taking into account the specific problems faced by community-dwelling people with dementia with continence problems,
- consider the need for unisex public toilets for disabled people to enable carers to provide assistance if needed,
- provide hygienic wipes in vending machines and install containers for disposable pads in disabled toilets as well as in toilets for women and for men,
- ensure that architects are sufficiently trained to understand the needs of people with dementia (e.g. related to cognitive impairments, possible continence problems and mobility issues within the home).
Last Updated: Tuesday 30 August 2016