Key learning points:
- There are an estimated 835,000 people currently living with dementia in the UK, a figure that will rise to over two million by 2050
- Having a heightened awareness of the risk factors for dementia can help primary care nurses spot the signs during a diabetes clinic or in smoking cessation groups
- Primary care nurses should be aware of what services are available in their locality to help support families living with dementia
Dementia is an umbrella term used to describe a range of progressive neurological disorders and syndromes.1 The most commonly observed syndromes are often cognitive decline, disorders of thinking, behaviour and the ability to perform everyday activities.2 There are many different types of dementia and it is possible to have a combination of types, such as Alzheimer’s disease and vascular dementia. However, the experience of dementia for each person diagnosed will be individual and each will present with different issues and problems.
For a primary care nurse, the detection of some cases of dementia may sometimes be straightforward and at other times more complicated. The individuality of how a person may present with dementia may make it difficult to observe regular patterns of presentation. Similarly, a recent study found that more than 50% of people who suspect they may have dementia put off seeking a diagnosis, sometimes for up to a year or more. Almost two-thirds of those surveyed felt a diagnosis of dementia would mean their life was over. All this would suggest we still have some way to go to change attitudes towards dementia and the stigma of this diagnosis.3
Identifying patients at risk of dementia
People aged 60 years and over make up the most rapidly expanding segment of the international population. By 2050, this group will treble in numbers from 605 million to two billion,4 increasing age being the strongest risk factor for developing dementia.5 Of these older people, it is estimated that, worldwide, 135.5 million people will have dementia by 2050.6 While emerging evidence is suggestive of a slowing of incidence,7 there are still an estimated 835,000 people currently living with dementia in the UK – a figure that will rise to over two million by 2050.8 So, while dementia is not a normal part of ageing, it is a disease that largely affects older people, given this association with age.
However, it is estimated that there are approximately 42,325 people with dementia under the age of 65 in the UK.8 It has also been suggested that the true figure could be much higher. This population may often be the most difficult to diagnose because of their age, the lack of awareness that dementia is even a possibility and the fact that clinicians often attribute symptoms to other conditions first (for instance, stress, depression or anxiety).
It is also suggested that only half of the people actually living with dementia in the UK have a formal diagnosis.8 While we know that the rates of dementia diagnosis are increasing because of a greater policy focus with such initiatives as The National Dementia Strategy9 and the Prime Minister’s Challenge10 and a resultant increased public awareness, practice nurses are in an optimal position to support increased vigilance and so improve this figure.
Some areas have robust pathways and services for assessing and supporting people living with dementia and their families, and some areas still have improvements to make. It would be worth finding out the current diagnostic rates for your area and what services are available for diagnosis and support for people living with dementia.
The World Health Organization has identified three stages that can help our understanding of how a person may present with dementia at different stages in the trajectory11 (see below). While acknowledging the individuality of the person, the WHO has defined dementia into three stages; early, mid and late.
Risk factors for dementia
Research to identify the modifiable risk factors for developing dementia is a relatively new field, so evidence is scarce. However, we do know that where other health targets have been set against diseases such as diabetes, midlife obesity and hypertension, for example, we can also to some degree modify a person’s risk of developing vascular dementia. Indeed, a recent study gave evidence to the dropping prevalence rates for vascular dementia because of health promotion.7
Dementia affects both men and women. However, because women in general live longer than men, we see a higher number of women with dementia. In the current population, women are more likely to develop Alzheimer’s disease and men are more likely to develop vascular dementia.8 Some of the reasons for this are still unclear, but we do know that men are more at risk of stroke, and therefore their risk of developing vascular dementia is higher.
There are a number of lifestyle factors that may increase a person’s risk of developing dementia in later life. Thus there are several health promotion opportunities to support the lowering of some risks. However, given the complex disease processes of many types of dementia, adherence to health promoting strategies offers no guarantees that a person would develop a type of dementia.
The key health promotion factors in reducing the risk of developing dementia include:
1. Eating a healthy, balanced diet.
2. Not smoking.
3. Taking regular exercise.
4. Reducing alcohol intake.
5. Keeping socially active and maintaining social networks.
6. Reducing cholesterol.
7. Lowering blood pressure.
There is also growing evidence to show that education and mental stimulation can reduce the risk of developing dementia.12
The role of the primary care nurse
Nurses should have an awareness and understanding of what dementia is and how it may present and should keep it on their radar. They may be taking a routine blood test for vitamin B levels, for example, and their dialogue with the patient can be enquiring and probing, and uncover many health and social-related issues. When managing a diabetes clinic or smoking cessation groups, the nurse can also be alert to any developing abnormalities that might suggest a possible dementia.
If the nurse understands why people may be frightened or reluctant to seek a diagnosis, this can put them in an advantageous place to address their fears, challenge the stigma and gently start to explore this diagnosis as a possibility. Often a person may be unaware of their decline and often it is a family member that observes the sometimes subtle changes.
There are also ways in which the primary care nurse can promote a healthy lifestyle among those at risk of developing dementia. For example:
- Encourage regular health checks with yourself and the GP, particularly if the patient has long-term conditions such as diabetes, cardiac or respiratory problems, underactive thyroid etc.
- Encourage patients to take advantage of well-person health checks and discuss the benefits of regularly checking blood pressure, cholesterol levels and weight.
- Regularly review medications. People, especially as they get older, are often prescribed many different medications and – even without dementia – they might get muddled or not comply correctly with regimes. They also self-medicate with over-the-counter drugs.
- Be vigilant about weight changes in older people; it may be a sign that someone is forgetting to eat, forgetting they have eaten and eating again or struggling with meal preparation.
The NHS Health Check programme is a useful resource to educate people about the risks of developing dementia.
Supporting the whole family
An essential element of the role of a primary care nurse is supporting families affected by dementia. There are an estimated 670,000 family and friends acting as primary carers of someone with dementia.13
Dementia costs the UK £26 billion a year; more than the costs associated with cancer, heart disease and stroke. Family carers save the UK economy £17.4 billion of this amount in a year and should be considered partners in care with health and social care professionals.
Carer distress is an all too common factor in caring for someone with dementia, whether or not the carer is living with the person with dementia. Research on the issues for carers of people with dementia spans many decades. Education for the carer on the illness, symptoms, communication, managing behavioural concerns, finances, legal issues and future planning can all help to reduce some of the burden.14 Find out what is available in your locality to support families so that you can signpost resources and services.
If you have an Admiral Nurse service in your area, it will also know about local support and might advise you and your team on how you can work together to support the families in your area. To find out if you have a local Admiral Nurse team, you can go to the Dementia UK Website.15
The three stages of dementia:
- Losing track of the time
- Becoming lost in familiar places
- Becoming forgetful of recent events and people’s names
- Becoming lost at home
- Having increasing difficulty with communication
- Needing help with personal care
- Experiencing behaviour changes, including wandering and repeated questioning
- Becoming unaware of the time and the place
- Having difficulty recognising relatives and friends
- Having an increasing need for assisted self-care
- Having difficulty walking
- Experiencing behaviour changes that may escalate and include aggression
1. Wilcock G, Bucks R, Rockwood K. Diagnosis and management of dementia: A manual for memory disorder teams. Oxford University Press, 1999.
2. Fratiglioni L, Qui C. Epidemiology of dementia. In: Dening T, Thomas A (eds). Oxford Textbook of Old Age Psychiatry. Oxford University Press, 2013.
3. Alzheimer Society. Dementia 2015: Aiming higher to transform lives. London: Alzheimer Society. alzheimers.org.uk/site/scripts/documents_info.php?documentID=2888 (accessed 1 December 2016).
4. World Health Organization. Dementia: a public health priority. WHO and ADI. 2012 who.int/mental_health/publications/dementia_report_2012/en (accessed 1 December 2016).
5. O’Connor D. Prevalence and incidence of dementia. In: Ames D, Burns A, O’Brien J (eds) Dementia. London: Hodder Arnold, 2010.
6. ADI. World Alzheimer Report 2016. alz.co.uk/research/world-report-2016 (accessed 1 December 2016).
7. Matthews FE, Arthur A, Barnes LE et al. MRC Cognitive Function and Ageing Collaboration. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study l and ll. Lancet 2013;382:1405-12.
8. Alzheimer’s Society.Dementia 2014: Opportunity for change. London: Alzheimer’s Society.
9. DH. Living Well with Dementia: A National Dementia Strategy, London: Department of Health 2009.
10. DH. Prime Ministers Challenge on Dementia: Delivering major improvements in dementia care and research by 2015, London: Department of Health 2012.
11. World Health Organization. Dementia Factsheet 362. who.int/mediacentre/factsheets/fs362/en (accessed 1 December 2016).
12. Brayne C, Ince P, McKeith I et al. Education, the brain and dementia neuroprotection or compensation?Brain 2010;133:2210-16.
13. Newbronner L, Chamberlain R, Borthwick R et al. A Road Less Rocky – Supporting Carers of People with Dementia. Carers Trust, 2013.
14. Brodaty H, Donkin M. (2009) Family Caregivers of people with dementia. Dialogues in Clinical Neuroscience 2009;11:217-28.
15. Dementia UK 2016 dementiauk.org/ (accessed 7 December 2016).