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United Kingdom (Northern Ireland)

2012: National Dementia Strategies (diagnosis, treatment and research)

Background information about the National Dementia Strategy

Status and historical development of the Northern Ireland Dementia Strategy

Following a consultation in 2010, the Department of Health, Social Services and Public Safety (DHSSPS) published a regional strategy for improving dementia services and support in Northern Ireland in November 2011. The strategy focused on improving understanding and early diagnosis, on the need for support and training for staff and on supporting independence of those affected by dementia.

Duration of the Northern Ireland Dementia Strategy

The Strategy’s Action Plan extends to 2015 - the limit of the current Assembly term.

How the Northern Ireland Dementia Strategy is funded

There are no details about funding for the implementation of the Strategy. It is acknowledged that significant resources are needed to take the actions forward. Reference is made to opportunities to release and redirect resources and the fact that there is already substantial investment in appropriate care and support which will be continued. An example of redirecting resources and opportunities to “invest to save” is an estimated 10% reduction in care home places releasing approximately £10m of public expenditure. Health Minister Edwin Poots who presented the Strategy to the Assembly in 2011 declared that no additional funds would be allocated to its implementation.  However, in September 2012 he announced his intention to allocate £1 million to the project.

Provisions or procedure for implementing the Strategy

The Strategy contains an action plan in which each proposed action is described and the organisation responsible for its implementation identified. This is accompanied by a target date for completion. Most of the completion dates are either 2012 or 2013. Several simply state “ongoing”.  The new Mental Capacity legislation, which is in development, is scheduled to be enacted during the lifetime of the current Assembly, so it will happen before Spring 2015.

Procedure for monitoring progress made in achieving the goals set

A few monitoring tasks are included in the action plan including ‘ongoing’ monitoring by the Department of Health, Social Services and Public Safety (DHSSPS) of implementation of Advocacy Services Guidance, which was published in January 2012.

The Health and Social Care Board and Public Health Agency will jointly lead the Dementia Strategy Implementation Group which will oversee progress and report to the Minister for Health at six month intervals. Otherwise no formal monitoring arrangements are contained in the Strategy.

Involvement of the Alzheimer Society (and/or people with dementia)

Alzheimer’s Society participated on the DHSSPS Strategy Steering group and on its Project Group.

Alzheimer’s Society in Northern Ireland secured funding from the DHSSPS to undertake a research project which would support people with dementia to participate in the development of the Dementia Strategy.  The Society worked in association with the Mental Health Foundation and designed and realised the Listening Well project. 

The project set out to secure the views of people with dementia around key themes which had been identified by the Bamford Review of Mental Health and Learning Disability.  These views were sought and documented in order to influence development of the Dementia Strategy for Northern Ireland.  The project was realised in two strands involving 1:1 interviews of people with dementia in their own homes, right across Northern Ireland and a single workshop event in the form of focus groups which included people with dementia and carers. 

The report was launched by Alzheimer’s Society in Belfast in November 2009.  It is entitled ‘Listening Well; people with dementia informing the development of health and social care policy.’  Listening Well findings are incorporated throughout Improving Dementia Services in Northern Ireland: A Regional Strategy.

Alzheimer Society overall assessment of the Northern Ireland Dementia Strategy.

Alzheimer’s Society welcomed the development of the strategy and the DHSSPS commitment to involvement of people with dementia in the process, through the Listening Well project.  The Society sees the Strategy as a huge opportunity to improve the quality of life of people with dementia but also to raise awareness of dementia in the population generally, informing people about reducing their risk of developing the condition, recognising symptoms to encourage early diagnosis and intervention and provision of appropriate community support.  However, lack of additional funding for implementation of such a significant strategy is a cause for concern.

Diagnosis, treatment and research

Issues relating to diagnosis

Timely diagnosis in the Northern Ireland Dementia Strategy

Awareness raising, support at the time of diagnosis and tackling stigma

The strategy contains the following observations and objectives in relation to the early diagnosis of dementia. First, it is necessary to raise awareness of the symptoms of dementia and to address stigma. People must know where to access help. Information and advice services are needed particularly in the voluntary and community sectors.

GPs and primary care teams should be able to recognise the possibility of dementia and there should be locally agreed pathways and protocols for referral to specialist services for diagnosis.

In concrete terms, the Public Health Agency will draw up and lead on a plan to address stigma, raise public awareness about what can be done to reduce the risk of or delay dementia and raise public awareness of the signs and symptoms of dementia and about the benefits of seeking help early. Trusts will also ensure that people who are diagnosed with dementia have access to advice and support at the time of diagnosis. This is to be provided by the Memory Services which should also be able to signpost to other sources of information and support.

Recognising that the stigma must be tackled at various levels and in different contexts, measure will be taken to challenge stigma relating to dementia and encourage better understanding among those providing services to the public. These measures will be developed by the HDSSPS, HSC Board, Public Health Agency and HSC Trusts in partnership with other public bodies and with local community and voluntary sector bodies.

Training, appropriate referral and specialist support

Recent research suggests that many GPs do not feel that they have sufficient training to diagnose and manage dementia (DHSSPS, 2005). Some are nevertheless diagnosing dementia alone without referring patients for specialist assessment despite the recommendation from the 1995 policy review that GPs should refer patients suspecting of having dementia for specialist assessment. Two recommendations have therefore been made. The first is to supplement an information pack for GPs provided and distributed by the Dementia Services Development Centre’s Northern Ireland Officer with information on local services available. The second is for the HSC Board in collaboration with the Public Health Agency and HSC Trusts to draw up criteria and clear protocols for referral from GPs to Memory Services. The HSC board, in collaboration with LCGs, Public Health Agency and Trusts will agree on a minimum range of services to be offered by memory services. This would be the same set of services for community as for hospital-based Memory Services. 

The number of referrals is likely to increase, especially as the number of older people increases. The capacity of the specialist services to manage that increase will be taken into account. The Strategy also acknowledges that there is likely to be a small number of cases which are complex and make diagnosis difficult. Examples include cases of dementia in younger people or atypical cases. For this reason, it is envisaged to set up a regional tertiary service led by one Trust with agreed referral criteria from local memory services.

Which healthcare professionals are responsible for diagnosing dementia

GP may diagnose dementia but as mentioned above, according to the 1995 recommendation, they should forward patients to a specialist for assessment.

The Strategy identified significant variation across Health and Social Care Trusts regarding memory services and specialists taking the lead in providing them, as outlined above.  The Health and Social Care Board and Public Health Agency will work with Health and Social Care Trusts to draw up criteria and clear protocols for referral from GPs to memory services by March 2013.

GPs usually spend 10 minutes per consultation but this can be extended according to need. For example, if a patient with dementia and his/her carer require more time, it can be allocated, but it is not always easy to gauge appropriate time in advance.

The National Institute for Health and Clinical Excellence (NICE) oversees the Quality of Outcomes Framework (QoF) as in England.  This is a voluntary incentive for GPs, which rewards them according to how well they care for patients.  GPs keep a register of all their patients with dementia, have a record of each individuals’ care plan and a record of reviews.

Type and degree of training of GPs in dementia

The GP curriculum is set by the Royal College of General Practitioners as in England.  All GPs have a basic understanding of the condition, the appropriate assessment tools and how the condition progresses, as well as awareness of treatments available for Alzheimer’s disease and licensed anti-psychotics.

GPs are expected to continue their professional development.  There is no set curriculum and study is self-selected according to individual interest or perceived training need, as in England.

Required tests to diagnose dementia

The National Institute of Health and Clinical Excellence (NICE) produces official guidelines as in England.  Commonly used tests include the 6-item Cognitive Impairment Test (6-CIT)  and the MMSE as in England.

Issues relating to medical treatment

Medical treatment in the Northern Ireland Dementia Strategy

The Strategy emphasises the need to promote the use of appropriate medication and to avoid the inappropriate use of antipsychotic drugs for the management of behavioural and psychological symptoms of dementia. The Northern Ireland strategy relies on NICE guidance in respect of antipsychotics.  The action point with regard to medication is:

“The HSC Board and PHA will ensure that medication for the management of dementia is prescribed appropriately, that medication review is an integral part of the care management process and that a range of therapeutic interventions are available to people with dementia and their carers appropriate to their assessed needs.” 

The Strategy also refers to NICE guidance in identifying a range of therapeutic interventions which should be available to people with dementia, including psychological therapies and states that the Health and Social Care Board and Public Health Agency will conduct an audit of interventions available for people with dementia care across all settings, including nursing and residential care.

The availability of Alzheimer treatments. 

NICE reviews drug treatments for Alzheimer’s disease and determines the clinical and cost-effectiveness of drugs for use in the National Health Service (NHS), as in England.  There are four drugs for Alzheimer’s disease currently licensed in the United Kingdom and one for the treatment of severe aggression/agitation in people with Alzheimer’s disease.  There are no licensed drug treatments for other forms of dementia.

Conditions surrounding the prescription and reimbursement of AD drugs.

NICE guidance published in January 2011 states that anti cholinesterase treatments should be available to people in the mild to moderate stages of Alzheimer’s disease and that Ebixa (Memantine) should be available for people in the severe stages and for people who are unable to tolerate anti cholinesterase treatments.  The situation is broadly the same as in England although the NICE link with Northern Ireland was only established in 2006. There are no restrictions concerning the prescription and reimbursement of AD drugs for people living alone or in care homes.

Prescription and reimbursement

Donepezil

Rivastigmine

Galantamine

Memantine

Available

Yes

Yes

Yes

Yes

Reimbursed

Yes

Yes

Yes

Yes

Initial drug reimbursed if prescribed by

Consultant

Consultant

Consultant

Consultant

Continuing treatment reimbursed if prescribed by

GP or consultant

GP or consultant

GP or consultant

GP or consultant

Required examinations

NICE diagnostic criteria

NICE diagnostic criteria

NICE diagnostic criteria

NICE diagnostic criteria

MMSE limits

10 - 26

10 – 26

10 – 26

10 - 20

Issues relating to research

Section 13 of the Northern Ireland Dementia Strategy is entitled “promoting research”. It starts with the statement that research on dementia is needed in three main areas, namely cause, cure and care. Emphasis is placed on understanding “the biological basis of dementia, possible ways of preventing neurodegeneration, the psychological and social supports that are most effective and ensuring that potential interventions are trialled and made available to patients as quickly as possible.” The importance of developing a coordinated approach to research, and pooling talents and resources is also recognised. 

One of the main aims of the Northern Ireland Dementia Strategy is for the Health & Social Care R & D to support researchers in the preparation of high quality applications for research on dementia for National Institutes of Health peer review via the US-Ireland R & D partnership as well as for major funding via UK Research Councils, the EU framework programme and major charities. This approach is based on the fact that Northern Ireland has a very small academic basis and limited resources for health-related research. The HSC R & D also intends to continue supporting the NICRN (Dementia) which carries out multidisciplinary, policy and practice relevant social scientific research with a particular emphasis on the rights of people with dementia and their unpaid carers.

Finally, the HSC R & D aims to support initiatives to build inter-disciplinary and/or inter-professional research in health and/or social care for people with dementia, especially those having a strong element of patient or public involvement.

References

Department of Health, Social Services and Public Safety (2011), Improving dementia services in Northern Ireland: a regional strategy, Accessed online on 10 July 2012 at: http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf

Listening Well: People with dementia informing development of health and social care policy (Northern Ireland): http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=819

Edwin Poots MLA, Minister for Health. Elizabeth Byrne McCullough, Alzheimer’s Society Policy & Public Affairs, Northern Ireland (2012), Focus on Dementia Strategies: Northern Ireland,Dementia in Europe: the Alzheimer Europe Magazine, p.37

Interview with Edwin Poots: http://www.alzheimer-europe.org/Policy-in-Practice2/National-Dementia-Plans/United-Kingdom-Northern-Ireland#fragment-2

Interview with Elizabeth Byrne McCullough: http://www.alzheimer-europe.org/Policy-in-Practice2/National-Dementia-Plans/United-Kingdom-Northern-Ireland#fragment-3

Acknowledgements

Laura Cook, Policy Officer, Alzheimer’s Society

Elizabeth Byrne McCullough, Policy & Public Affairs Officer, Alzheimer’s Society in Northern Ireland

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Dementia in Europe Yearbook as part of Alzheimer Europe's 2012 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 from the Alzheimer Europe Foundation for the preparation and publication of its 2012 Yearbook.
  • European Union
 
 

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