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Caring for people with dementia: what’s your strategy?

The UK government's long-awaited dementia strategy, Living Well with Dementia, was launched in February 2009, with 17 objectives to increase awareness, improve services and increase training in dementia care. Dementia specialists describe this as a "golden moment" we should seize at once; but do all healthcare professionals feel the same?

Carol Rushton
Community Psychiatric Nurse
Community Mental Health Team
Pennine Care NHS Foundation Trust

Jackie Kindell
Speech and Language Therapist
Community Mental Health Team
Pennine Care NHS Foundation Trust

Donna Davenport
Senior Lecturer
Manchester Metropolitan University

The aim of the National Dementia Strategy is "to ensure that significant improvements are made to dementia services across three key areas: improved awareness, earlier diagnosis and intervention, and a higher quality of care" and this should "result in significant improvements in the quality of services provided to people with dementia and should promote a greater understanding of the causes and consequences of dementia".1

The term "dementia" is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities.2 These symptoms are caused by structural and chemical changes in the brain as a result of various physical diseases, such as Alzheimer's, vascular disease and Lewy Body disease.

Symptoms of dementia are progressive and worsen with time. Although the condition is terminal, people can live with it for seven to 12 years from diagnosis. Dementia can affect people of any age, but is most common in older people. One in five people over the age of 80 have a form of dementia and one in 20 people over 65 have a form of dementia. It is estimated there are nearly 700,000 people with dementia in the UK. Dementia costs the UK economy £17bn a year and, in the next 30 years, the number of people with dementia in the UK will double to 1.4m, with the costs trebling to over £50bn a year.2

While these figures are shocking, the story behind the statistics is really about the profound impact dementia has on the person and their carer. Dementia affects the quality of life of everyone in the family and research has shown that carers experience high levels of depression and physical health problems as a result of the burden of caregiving.3 Many of you reading this article may know a friend or relative with dementia and be aware of its devastating impact.

Proposals put forward by the dementia strategy include the introduction of a dementia specialist into every general hospital and care home in the country, and for improved memory assessment services (see Box 1).

[[Box 1 object]]
Currently, only about one-third of people with dementia receive a formal diagnosis at any time in their illness, resulting in unequal access to services. Presently, diagnosis is all too often made at a point of crisis or too late in the condition for the person to make their own plans and choices. The strategy advises that early diagnosis and postdiagnostic support and intervention services should be developed in every locality, so that every person with dementia and their carer have equal access to such provision.

Many areas may require initial extra local investment to establish such services, but it is believed that this is cost-effective in the long term.1

Dementia in primary care
With the introduction of the national strategy there has been a surge of media attention on the subject of dementia that is long overdue. But are we able to cope with the wave of public interest? Are our services in a position to effectively diagnose, treat and support people with dementia and their carers?

As a primary care nurse you will come into regular contact with people who are not yet diagnosed or who are in the early stages of the illness. This period of time can be full of worries, concerns and risks. Some people describe this as the one of the most difficult stages, with feelings of isolation and anxiety about what lies ahead. Forward planning can be essential in coping with this illness. Common questions include:

  • Is this a normal part of ageing?
  • When shall we tell the family?
  • What treatments are available?

A life-changing event can also be a prompt to look to the future and people often worry about legal issues, such as making wills and managing their finances should they lose capacity. The Mental Capacity Act makes provision for these circumstances and related issues, and its code of practice is a
useful resource.4

A common issue for people with early dementia is whether they are able to continue driving. It is the law that people with a diagnosis of the condition have to inform the Driver and Vehicle Licensing Agency (DVLA), triggering an assessment of their ability to continue driving. Do you feel equipped to discuss such delicate and life-changing decisions with people with dementia?

Primary care professionals often state that they do not know which way to signpost people or, indeed, find it difficult to open a discussion on a noticeable decline in cognition and functioning. A review of the evidence highlights a variety of reasons for this, including: the belief that nothing can be done for dementia; risk avoidance; concerns about competency; and concerns about the availability of resources.5

To do nothing is not an option; we wouldn't dream of not referring a patient whom we suspected of having cancer; yet all too often we put off seeking a diagnosis of dementia until a crisis occurs. Even saying the word "dementia" is something people avoid at all costs. Specialists liken this to cancer care, where 30 years ago the word "cancer" was feared and avoided. Surely we can do better than this?

The strategy outlines the role of primary care to be that of identifying those with troublesome symptoms early, excluding any other explanatory disorder such as a physical health problem, and referring on to a specialist service for that individual to receive a definitive diagnosis. A clear pathway will be required and primary care nurses have a vital role to play in this process. Are you aware of where to refer people with dementia in your locality?

Ways to improve care
The Stockport Alzheimer's Society and staff from the Pennine Care NHS Foundation Trust have recently joined forces to produce an informative DVD called "Support in Early Dementia: A Stockport Guide". The idea of a DVD came from a carer on the local branch committee. It was felt that a high-quality DVD would help address some of the difficulties with accessing information in the early stages. At this point, information can be too much or too little; of low quality; depressing; or not sufficiently innovative or engaging. In addition, we wanted an information tool that would address the person with dementia and that would be useful for busy carers who often have many questions and concerns at this stage.

The DVD gives a voice to people with dementia, their carers and local professionals, and is a realistic but sensitive portrayal of the issues. It is hoped that it will help increase professional and public awareness and also reduce stigma, as advocated by the strategy.

The DVD highlights the importance of gaining an early diagnosis and support. A local GP outlines the vital role played by primary care and the interface between primary and secondary services. Also discussed are the symptoms of dementia, specialist services, sources of information and support and carers' needs.

The DVD promotes support from the Society in different ways and includes footage of our local health promotion "walk and talk" group for people with a vascular dementia. Health promotion and keeping physically healthy is vital in dementia.3
Looking at risk factors for patients can really help to make a difference; it is no longer acceptable to say, "There's nothing that can be done". Patients need to have regular blood pressure checks. Blood and urine testing is a vital part of diagnosis and should also be considered at the first sign of any physical health problems along the way. Practice nurses undertake screening as a major aspect of their role.

The New GMS Contract (2008/09) Quality and Outcomes Framework has clear standards for dementia and their carers, and it is essential that practices work towards achieving these standards. Simply having a register is not enough; measures need to be in place for appropriate referral and collaboration with the multiprofessional team.6

In Stockport, we are fortunate to have a dementia training resource, which offers carers support and information, and facilitates training days for professionals and voluntary sector workers. We anticipate that demand for training will increase from all professionals in regular contact with older people, including practice nurses, pharmacists, and reception staff at GP clinics (who are often the first people to notice problems that could lead to a diagnosis). Such training could include: early recognition and diagnosis of dementia; understanding and managing symptoms and issues of risk; accessing local services; and sources for specialist advice.

The DVD has been positively received by people with dementia, their carers and staff in Stockport and by the Alzheimer's Society, who are launching the DVD on various roadshow events to reach as many people as they can. The DVD will be given free to people with the illness, interested professionals and any potential fundraisers for the Society.

In a world of increasingly sophisticated technology, the DVD is an innovative mode of communication that can be viewed at home. We believe it is a useful tool for people with dementia and for local health professionals to provide people with the support they need to live well with their dementia.

[[Pract point dementia]]

1. Department of Health (DH). Living Well with Dementia: A National Dementia Strategy. London: DH; 2009.
2. Dementia UK. A report to the Alzheimer's society on the prevalence and economic cost of dementia in the UK. London: Kings College London; London School of Economics; Alzheimer's Society; 2007.
3. National Institute for Health and Clinical Excellence (NICE)/Social Care Institute for Excellence (SCIE). Dementia: Supporting People with Dementia and their Carers in Health and Social Care. London: TSO; 2006.
4. Department of Health. Mental Capacity Act 2005: Code of Practice. London: Stationery Office; 2007.
5. Iliffe S, Wilcock J, Haworth D. Obstacles to shared care for patients with dementia: a qualitative study. Fam Pract 2006;23(3):353–62.
6. Department of Health (DH). Quality and Outcomes Framework (QOF) Guidance for GMS contract 2008/9. London: DH; 2008. Availble from:

The Alzheimer's Society

Department of Health

National Institute for Health and Clinical Excellence (NICE)