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Journal of Community Nursing – Sept/Oct 2012 “Optimising treatment and care for dementia patients”

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It is estimated that approximately 820,000 people in the UK are living with a form of dementia; this number will increase with the rise in the number of elderly people in the UK1. Dementia occurs following damage to the brain caused by a number of different organic brain diseases and other physical traumas. Signs and symptoms include short-term memory problems, communication difficulties, a lack of orientation in time and place, and difficulties with spatial awareness, coordination and comprehension. In advanced dementia, communication difficulties may be so pronounced that they make medical intervention of any sort hard or impossible to perform.

Alzheimer’s disease, the most common form of dementia, accounts for around 60 per cent of all cases, with vascular dementia accounting for 15-30 per cent. Table 1 outlines dementia classifications and demography.

 

Table 1: Types and presentation of dementia
  Alzheimer’s
disease
Vascular
dementia
Lewy body
dementia
Fronto-temporal
dementia
Prevalence 60% 15-30%  4-20%  2%
Affects Older people,
mainly women
Those with
ApoE gene or
Down’s
Syndrome
Those with;
diabetes
Hypertension
CHD
CVE
Predominantly
men
Older People Under 65s
Predominantly
men
Presentation Poor memory,
confusion,
anxiety and
distress
Increasingly
unable to
self-care,
depression,
apathy,
aggression,
wandering,
incontinence,
difficulties
with eating
Poor planning
or decision-
making ability,
clumsy
walking and
movements,
poor
concentration,
apathy,
depression,
aggression
Slow and
jerky
movement,
tremors, falls,
hallucinations,
fluctuating
levels of
awareness
or confusion
Altered
personality
personality
communication
speech
Prognosis Progressive
worsening
of problems
and loss of
independence
Variable;
can be stable
for some time
then sudden
worsening
Progressive
worsening
of problems,
loss of
independence
largely
because of
physical
problems
Progressive
worsening
of problems,
loss of
independence
largely
because of
physical
problems
CHD= Coronary Heart Disease
CVE= Cerebro-vascular event 

Once dementia has been diagnosed, there must be a clear shift to establishing a disability management model – how to care for the individual and promote a good quality of life. Currently, pharmacological interventions can help manage some of the symptoms of the condition for a period of time, enabling patients to continue to function as independently as possible for longer. Acetylcholinesterase (AChE) inhibitors are recommended2 for people with mild to moderate dementia, with memantine recommended for those with moderate to severe dementia. The positive effects of these drugs are not shared by all people with dementia, and do tend to ‘plateau’.

Bridging the communication gap; the Specialised Early Care for Alzheimer’s (SPECAL) method

Practitioners need to consider the subjective experience of dementia from the viewpoint of the patient in order to understand what the individual needs us to do to support them. People with dementia often have great difficulty communicating their needs due to the cognitive deterioration they are facing3. The SPECAL Method bridges this gap and has been successfully used by the Good Care Group in the domestic environment4.

Pritchard and Dewing’s evaluation of the SPECAL Method demonstrated that after implementation5:

people with dementia take less medication
people with stay at home longer and if they live long enough to benefit by nursing care, move into formal care settings with less distress
family carers experience less guilt
carers report a plateau effect in the disease process
Two further studies are currently being evaluated.

The SPECAL approach involves building up a detailed profile of the individual; likes and dislikes, and describing words and actions which make the individual feel comfortable, contented and co-operative. The profile can be shared by health care professionals and a community nurse with an understanding of the method can immediately attune the care approach appropriately.

SPECAL harnesses intact memories, often from many years previously, to assist in creating a feeling of wellbeing. The method uses the SPECAL Photograph Album, an analogy used to explain how normal memory works, what happens with age, and the significant change occurring with the onset on dementia6. The principle is that every individual has a memory system, likened to a photograph album, containing pages of memories, or ‘photographs’, which build up as the person goes through life. The moment a person experiences anything, a photograph is taken and stored in their album in a process which is unobserved and automatic. Each photograph contains two features: the information about what has just happened, and the associated feelings. The album falls naturally open on today’s page, because that is where the latest photographs are flying in, and it is access to the latest photographs that we need to make sense of the here and now.

People living with dementia start to store a new type of photograph on today’s page, a fact-free feelings only photograph, known as a “blank”. Once a blank has been stored, it will randomly, intermittently and with increasing frequency reoccur on today’s page, until the person is operating almost fully on feelings, with very few new facts available. Making sense of the present becomes difficult or impossible, and people with dementia will almost always resort to using the facts from old intact photographs from many years ago, to make sense of the present. This is why dementia may cause for example, a woman in her 90s to want to speak to her mother, or an elderly man to start looking for his favourite office suit.

Using this understanding of the natural tendency of people with dementia to make sense of the present in terms of the past, the SPECAL Method supports individuals to use old photographs to provide an acceptable context for today, bridging the gap between the intact memories of the past with the activities of the present. Identification of appropriate old memories is possible through meticulous collection of a great deal of background information about the individual and then use of SPECAL Observational Tracking (SPOT) to organise this information into themes and explanations which help the individual reach safe places in his or her long-term memory. An example of this is a woman who in her early life had a ‘cancer scare’ and was given the ‘all clear’7. As an elderly person, facing a situation which she could not understand, the words “all clear” could be introduced in dialogue in such a way as to provide reassurance. For example, when she was offered a bath, and questioned her carer as to why on earth she should go along with this idea, the carer would smile reassuringly and say, ‘come on now, we have been given the all clear, and we need to keep it that way’. This made sense to the lady, and was imprinted in her long term memory. She would happily acquiesce to the request to have a bath.

When the SPECAL Method is applied, the person with dementia is not asked direct questions as these can be stress inducers8. Information is continuously collected from the person, and behavioural clues as to what generates positive and negative reactions are noted. Contradicting the individual is always avoided as contradiction and blaming can lead quickly to an erosion of self-esteem9. Resolution therapy10 recommends avoiding informing or correcting a person with dementia, who is unable to reliably store new information. Informing and correcting are said to increase feelings of ill-being and often serve little function as the person with dementia may well not store the new ‘correct’ information that is being presented. For example, a woman in her 80s is asking for her mother, and a carer informs her that her mother died many years ago. The woman is understandably devastated by this information. However, due to her dementia and dysfunctional working memory, the new information fails to store. Within seconds she is left feeling bereft and upset, with no idea why. She immediately asks the carer for her mother – the one person who she knows she can turn to in times of distress. And so a vicious circle is born. Validation therapy provides a more appropriate response: ‘I never met your mother, I expect she was lovely’, is an invitation for the lady to talk about her mother, and her feelings, without facing the dreadful reality that she has forgotten her death.

Care planning

The care plans must be in tune with the specific type of dementia that the person is living with. However, a truly individualised care plan will focus much more on who the person is, and what their individual needs and wishes are, as these are far more immediately important than labelling a person with a diagnosis.

For the profile of the individual, three questions are asked:

who is this person?
who was this person?
who would this person have been, had dementia not come into their life?
The answers enable a care plan to be developed allowing the individual with dementia to live as close as possible to the way he or she would have wished; the client, not the diagnosis, leads the way.

It is interesting to note, however, that certain types of dementia have particular characteristics which may influence the way in which care is provided.

Lewy body dementia
Lewy body dementia causes loss of cognitive function caused by deposits- Lewy bodies – of abnormal proteins in brain cells11. Lewy body dementia shares many of the signs of both Alzheimer’s and Parkinson’s disease12. Individuals living with Lewy body dementia seem to be able to move between the outside world and their own internal reality. When in the outward world, the person interacts freely with the environment and the people in it; when in the inward world, the individual may act almost like a sleepwalker – driven by some internal force, seemingly unaware of the external environment, moving erratically with little regard for objects and obstacles, often risking falls or injury. Profound hallucinations frequently accompany this state.

In the latter state, trying to engage in conversation or orientate them back to reality, causing confusion and distress. The individual should be helped through inward world states without interruption, contradiction or questions. Carers should make provision for a safe environment, and be prepared to validate experiences rather than distract or contradict them. A robust care plan will include strategies for the resolution of anxiety caused by hallucinations.

An example of this is Fred, who suffered profound hallucinations about his daughter as a baby. He could “see” her trapped in a bin or the washing machine. Fred would become very agitated, and start throwing the bin across the room or trying to pull the washing machine away from the wall. He was so immersed in his inward trauma that it was impossible to reason with him and reassure him. However, by providing him with an extremely lifelike “baby” doll, which weighed 7 lbs and felt just like a new born baby, he would visibly relax in seconds, and start to rock the baby, holding her in his arms, and becoming calm and contented once again.

Vascular dementia
Vascular dementia is caused by an abnormal supply of blood to the brain13; people living with this condition can present an extremely uneven cognitive profile2. Here, the brain is bombarded by unpredictable mini strokes which cause diffuse damage to brain tissue in localised areas2. This is distinct from Alzheimer’s type dementia, in which brain damage is fairly widespread and deterioration occurs at a steady and quite predictable pace2.

As is known from stroke survivors, the brain creates new pathways are found round areas of damage, a process called neural plasticity14. Following a mini stroke in vascular dementia, there will be deterioration in cognitive ability followed by either a plateau, or even a slight improvement as the brain finds a way of working round the damage. Parts of the brain will not have been damaged, which means that extremely lucid moments will arise and many cognitive strengths remain. However, progression of the disease and the associated pattern of deficits will be unpredictable2.

Those caring for individuals with vascular dementia should not assume that the patient will remember or not remember something, but adopt an approach which validates and supports the patient’s current lived experienced and sense of reality. Close observation of the person, together with quick responses to whatever the individual is presenting or communicating is essential. Due to the unpredictable nature of the disease, the pattern of strengths and weakness varies and moments of great insight and lucidity are common, as are periods of intense confusion and depression2.

In dialogue with a person living with vascular dementia, the carer needs to ensure that the person’s sense of reality and associated wellbeing are carefully maintained. Switching between confusion and reality can cause people with vascular dementia to experience paranoia and suspicion about the actions and motives of those around them. In these instances, a “silly me not silly you” concept is effective in reassuring the client and maintaining rapport. With this concept, the carer is always regarded as the slightly incompetent one who is at fault, and “thank goodness the client is here to wisely keep an eye on them”. An example of a phrase a carer can use in these circumstances is: “You are absolutely right. Sometimes I say the most ridiculous things.”

What is the state of dementia care in the UK currently?

The challenge for community nurses is to optimise treatment and care outcomes for those with dementia, while ensuring efficiency. However, a recent Alzheimer’s Society (AS) report15 suggests that while people with dementia greatly value living in their own homes, a lack of support leads to both admission to hospital and early entry to care homes in about a third of cases, and unpaid carers becoming stressed and ill. The report demonstrated that 83 per cent of people with dementia felt that staying in their own homes was important, 59 per cent felt that remaining an active part of the community was important, and 50 per cent felt that people with dementia are not given sufficient support. The report also found that where support was provided, significant benefits were realised such as improved health and emotional wellbeing, and delayed admission into long term care.

People over the age of 65 living with dementia accounted for one quarter of all hospital beds in the United Kingdom. Interestingly, individuals with dementia stay far longer in hospital for a particular condition; studies have demonstrated that 86 per cent of nurse managers believed people with dementia generally have much longer stays in hospital than those without16,17; for example, the average duration of stay after a hip fracture was 43 days for patients with dementia, compared with 26 days in patients who were psychiatrically well18. In addition, the longer people with dementia stay in hospital, the worse both their dementia and physical health become.

The main issue is that while the benefits of highly focused care at home for individuals with dementia are widely recognised17, the delivery of such care remains seldom achieved17. A number of guidelines are available, such as those from the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence (NICE-SCIE), the Alzheimer’s Society16 (AS 2007), and the National Dementia Strategy19 but it would appear that the recommendations contained within them are seldom implemented.

 

Box 1: Principles for dementia care
  • Respond positively to fond memories mentioned by the individual; bring them into future conversations
  • As often as possible, draw information from the individual and look for behavioural clues as to what generates positive and negative reactions
  • A profile information sheet should include a synopsis of how the “communication gap” that may exist with the person can be most effectively bridged; it is shared by all those treating and caring for the individual, assisting continuity in communication and helping to optimise care and treatment outcomes
  • Do not contradict the individual as this is pointless and unproductive
  • Do not ask the individual direct questions – these can significantly raise the person’s level of stress
  • Be ready to use the “silly me” concept and assume blame if a difficulty arises

 

Nursing patients with dementia presents challenges. In 2009, the Alzheimer’s Society17 found that:

89 per cent of nurses found working with people with dementia to be very challenging
34 per cent felt they had not had enough training
54 per cent had had no training at all
77 per cent stated that anti-psychotic drugs are always or sometimes used to manage people with dementia in hospitals
Clearly, care is falling far short of what it needs to be3. The national audit of dementia in 2010 found that fewer than half patients with dementia receive a mental state test during hospital stays, even though the majority of hospitals have this as a standard part of their policy for the care of people with dementia.

Community based approaches such as the SPECAL Method, enable people with dementia to remain at home for much longer, with reduced need for medications and increased overall wellbeing. It has been shown that care in an individuals own home is much more cost effective than care delivered in a residential care home or hospital ward3 (health foundation 2011). Further information can be obtained from the Good Care Group (www.thegoodcaregroup.com).

Recommendations

The understanding of dementia which arises from the SPECAL Photograph album enables any health care professional to adopt simple strategies and principles which will improve outcomes for patients with dementia. The Good Care Group, as a provider of one-to-one live in care, has been able to apply the method in a committed and highly individualised way through ongoing training for both professional carers and care delivery managers. However, it is recognised that in a primary care setting, where the luxury of one to one care is not often achievable, the intense care profiling process outlined above may not be realistic. However, there is much that can be achieved by any individual working with a person with dementia in any care setting by adopting simple principles arising from the method (Box 1).

Conclusion

Given the increasing number of elderly people having dementia in tandem with other conditions, the need across healthcare for structured techniques to communicate effectively with them will become more and more essential. Community nurses who become skilled in supporting individuals with dementia in their own homes will not only improve the lives of these people but will also assist the effectiveness of carers – whether they are healthcare professionals or unpaid carers.

References

1. Dementia Research UK (2011) Dementia Statistics. Dementia Research UK, London
2. National Institute for Health and Clinical Excellence and Social Care Institute for Excellence, (2007) A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care (National Clinical Practice Guideline Number 42). The British Psychological Society & Gaskell and The Royal College of Psychiatrists, London
3. The Health Foundation. (2009) Spotlight on dementia care. A Health Foundation improvement report. The Health Foundation, London
4.The Good Care Group (2011) Dementia Care. thegoodcaregroup.com/dementia-care/
5. Pritchard EJ, Dewing J. (2001) A multi-method evaluation of an independent dementia care service and its approach. Aging & Mental Health. Vol. 5 No. 1, 63-72
6. Garner P. (2008) The SPECAL Photograph Album (3rd edition). Windrush Hill Books, Hawling
7. James O. (2009) Contented Dementia. Vermilion, London
8.Alzheimer’s Society. (2010) Specialised Early Care for Alzheimer’s (SPECAL). Alzheimer’s Society, London
9. Fiel N, De Klerk-Ruben V. (1972) The Validation Breakthrough; Simple Techniques for Communicating with People with Alzheimer’s-Type Dementia. (2nd ed).
10. Stokes S. (2000) Challenging Behaviour in dementia; A person centred approach. Winslow
11.The Lewy Body Society. (2011) What is Lewy Body dementia? http://lbda.org/category/3437/what-is-lbd.htm
12.McKeith IG, Perry EK, Perry RH. (1999) Report of the second dementia with Lewy body international workshop: diagnosis and treatment. Consortium on Dementia with Lewy Bodies. Neurology. 53 (5) : 902-5
13.Alzheimer’s Society (2011) What is vascular dementia? Alzheimer’s Society, London
14.Johansson B. (2000) Brain Plasticity and Stroke Rehabilitation, The Willis Lecture.Stroke. 31: 223
15.Alzheimer’s Society (2011) Support. Stay. Save. Care and support of people with dementia in their own homes. Alzheimer’s Society, London
16. Alzheimer’s Society. (2007) What happens to people with dementia identified in general hospital?http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=596
17. Alzheimer’s Society (2009) Counting the cost: Caring for people with dementia on hospital wards.Alzheimer’s Society, London
18. Henderson C, Malley J, Knapp M. (2007) Maintaining good health for older people with dementia who experience fractured neck of femur: report for phase 2. Report for the National Audit Office. NAO, London
19. Department of Health (DH) (2010) Living well with dementia: a National Dementia Strategy. HMSO, London

Primary Health Care – December 2011 “Building communication bridges with dementia patients is vital” Independent Practitioner – July/August 2012 “Take risks and work hard to realise them”
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