Improving Domiciliary Care for People with Dementia

Appendix 3: What does a personalised approach mean for a person living with dementia?

Document details

Title / Improving domiciliary care for people with dementia
Appendix 3: What does a personalised approach mean for a person living with dementia?
Description / This report has been commissioned by the South West Dementia Partnership. It reviews the current position of domiciliary care in the South West of England in delivering quality support for people with dementia and their carers, considers the challenges faced and makes recommendations for commissioners and service providers regarding how to move forward with improving provision.
Version / Final
Date / 7 April 2011
Author / Catherine Pascoe, Associate Development Consultant
Department of Health South West.
Publisher / South West Dementia Partnership
URL /

Introduction......

Living with Dementia......

Making connections and building relationships......

Risk......

Understanding cognitive abilities......

Prevention and early intervention......

Complex needs......

Person-centred care......

Conclusion......

Introduction

If community support for everyone is delivered in line with Putting People First (HM Government, 2007)[1] the personalised responses outlined should clearly result in improved outcomes for people with dementia and their carers.

However, people with dementia have some areas of particular need and face some particular barriers that will impact on the benefits that they might experience from this more generic personalised approach, if they are not taken into account. It is important to spell out what these particularly needs are and identify how they could be addressed.

Living with dementia

A person’s experience of dementia will vary widely, however, there are some difficulties that commonly occur as a result of damage to the brain. These include difficulties with:

visual and auditory processing, for example seeing only part of what is in front of you
body management and awareness, for example difficulty in initiating actions or difficulty in coordinating arms, or other body parts, when getting dressed
memory
language
thinking and reasoning
planning, judging and controlling.

These can lead to further difficulties with:

communicating with others and making connections
making sense of things
doing things.

The late Professor Tom Kitwood who set up the pioneering Bradford Dementia Group at the University of Bradford, shows us that a person’s actual experience of dementia results from the interplay of a number of factors:

Experience of dementia = Health + Life story + Personality + Neurological impairment + Social psychology(Kitwood, T., 1990)[2]

Thus someone’s experience of dementia is not just about the neurological difficulties that they may experience, as a purely medical model would suggest; it is also about a combination of these other factors as well.

Many older people have a range of conditions and needs. Where someone is on their journey living with dementia can be a very different place to where they are on their journey with another condition. For example a person may be receiving support due to other physical health needs that make life very difficult for them, and developing dementia becomes another complicating factor. The nature of their support needs at this early stage in their journey with dementia can be very different to those they may experience at a later stage.

If we are seeking to understand what someone can do, build on their strengths, maintain their sense of self and independence and help them to remain connected with other people and their environment, it is essential that the impacts of all the factors outlined by Kitwood are understood and taken into account when directly delivering care and support, when designing the operational arrangements required to ensure appropriate delivery, and when designing whole systems support around a person’s journey with dementia.

Making connections and building relationships

It can be particularly hard to meet the essential human psychological needs[3] of a person with dementia as the disease progresses. Not only do the cognitive difficulties they experience make communicating with and interacting with others difficult but the responses they receive from others can also be very undermining. Kitwood is especially concerned about what he calls the “malignant social psychology” that people with dementia can experience and the considerable impact that this can have on them. He goes as far as to suggest that the chemical changes that happen in the body when we are under stress and distressed, or in a state of “ill-being”, could actually accelerate the neurological damage someone with dementia experiences. Kitwood considers improving social psychology, or improved interactions with others, as the greatest opportunity we have in enhancing the experience of people living with dementia.

The maintenance of self-esteem is essential to feeling properly “in control” of your life. Where it is lacking it is all too easy to fall into a cycle of discouragement and failure.

Our society puts particular value on intellectual capability. When a person is identified as having dementia they are often treated very differently. There is a widely held perception that dementia equals incompetence and derangement, resulting in people with dementia receiving very negative experiences of contact with others and the “malignant” social environment that Kitwood describes, which over time will drastically undermine a person’s self-esteem.

Many of us struggle with understanding how to make a connection with a person with dementia who may not be able to communicate well verbally, and can seem to behave in a strange and unusual way. Putting ourselves in the person’s shoes and learning to understand what life is like living with dementia can help enormously in improving the quality of care provision.

It is essential that when providing support we emphasise the importance of the social elements of that support. The quality of the interactions between people living with dementia and those providing care and support and the relationships that they develop, are just as important as meeting other basic practical needs such as eating and dressing.Care givers need to find ways of maximising opportunities to engage with the person they are supporting and bring them into and include them in the social world. This is a key part of the “work”. When framing key outcomes and how those outcomes will be met it is essential that this dimension of care and support is taken into account and given equal weight.

In addition, where a care worker is able really get to know someone with dementia this can have a very beneficial impact in terms of noticing changes or deterioration.

People with dementia can have much more difficulty in communicating their needs. As dementia progresses they are less able to communicate pain verbally or to tell you if they are experiencing any difficulties. Relatively uncomplicated conditions, such as infections or constipation, may not be spotted early enough and may result in deterioration and possible hospital admission. Care workers who know someone well are better able to know where someone is acting differently or to spot signs of distress, and have a key role in interpreting what might be going on and then seeking help to get it sorted promptly.

Risk

Nothing ventured, nothing gained: Risk guidance for people with dementia, states that:

“One of the biggest barriers to enabling people with dementia to have more control over their lives is an overly cautious approach to risk. ‘Safety first’ approaches are disempowering for people with dementia (Clarke et al., 2009[4]; Nuffield Council on Bioethics, 2009[5]) and can prevent them from doing things that most people take for granted (Department of Health, 2007)[6]. They may also act as a barrier to offering people with dementia a full choice of services and support, particularly when accessing personal budgets or self-directed support (Association of Directors of Adult Social Services/Department of Health, 2009)[7].” (Department of Health, 2011)[8]

It is important to understand vulnerable situations from the perspective of the person with dementia and to consider the impact on their wellbeing and autonomy, as well as the possible risks to their physical safety. A clear risk assessment and management approach is crucial.

Telecare tools can be helpful in understanding risks and the difficulties people are experiencing more fully[9] and in managing the environment[10] to support empowerment, independence and self esteem.

Understanding cognitive abilities

If one of the outcomes we are seeking is that a person with dementia maintains their abilities and independence for as long as possible, in the context of a progressive disease, it is important to understand the nature of that person's cognitive abilities so that we do not deskill them by doing something for them which they could do themselves. It is equally important that we do not undermine someone’s self esteem by having expectations that are too high.

A person’s physical ability will be a factor in what they can or cannot do (part of the health component of Kitwood’s model) but so will their cognitive ability, for example are they able to dress themselves if clothes are handed to them in the correct order? If they have problems with initiating movements, could being given a verbal prompt or starting the required movement for them help? Understanding the interplay of the two is important.

It can be assumed that because a person has dementia and they seem puzzled when faced with the task of getting dressed they need it done for them; or that because they have dementia they cannot benefit from rehabilitation or reablement. The evidence is clear that people with dementia can benefit from such approaches, both in terms of physical functioning and cognitive function. Goals for such interventions should focus on what is important to the person and their carers/family and should be about improving quality of life and maintaining people’s resilience in addition to levels of functioning. Helping someone to retain skills over periods of acute confusion can be particularly important in supporting that person’s independence for longer.

We know that motivational factors are also important in relation to rehabilitation and reablement. Strengthening the sense of self and identity and enhancing feelings of being in control are key. Understanding people’s preferred coping strategies and building on these in support planning can help to foster this.

Thus the nature of the support that is provided and how outcomes are achieved in practical terms become particularly important from the perspective of home care delivery. Assessment and support planning tools, or care plans (May, H., 2009[11]; Pool, J., 2008[12]), need to include identification of cognitive abilities and ways of delivering support to build on strengths and address issues. Training programmes need to support staff to understand cognitive abilities and supporting people with dementia to remain independent.

We know that an individual’s abilities can fluctuate from day to day, which can make care delivery very challenging, but people will lose abilities more quickly if they are not using them.

Being able to do things for ourselves helps us feel competent and confident. It helps maintain our resilience and ability to carry on and not give up on life. We feel more in control. Deskilling and undermining people will result in a quicker, more dramatic decline.

Prevention and early intervention

If we are delivering support in a culture where “the job” is seen as delivering physical tasks but relationships between the person and the carer are not valued and individual support is not tailored to individual strengths and abilities, we are less likely to be able to deliver on outcomes such as maintaining well-being, enabling people to remain engaged in their community and supporting the person in their own home. In fact this is more likely to result in the person becoming frustrated and agitated, potentially leading to aggressive reactions or falls, or to become withdrawn and depressed, not eat or drink properly and possibly become more physically frail. Any of these scenarios have the potential to result in a crisis and possible admission to hospital or long term care. It is well established that a hospital admission for someone with dementia significantly increases the risk of poor outcomes and a potential move to a care home setting.

Efficient and effective care delivery for people with dementia is about supporting them to achieve what is important to them on that day. Purchasing time slots of task-focussed care is unlikely to achieve this.

As with other long term conditions, anticipating potential situations and difficulties that may arise and planning in advance how these can be address is also an important part of taking a preventative approach. How plans are then recorded and shared to ensure they are put into practice at the appropriate time remains a further challenge. Lessons can be learnt from carers emergency planning approaches.

Carers

The vast majority of community support is provided by family and friends. The National Dementia Strategy (2009) states that carers are the most valuable resource for people with dementia. The Alzheimer’s Society tells us that there are 600 000 carers of people with dementia in the UK providing support worth over £6 billion (2011)[13]. We also know that carer breakdown is a major risk factor for both inappropriate admission to hospital and early admission to long term care for people with dementia. Caring for a person with dementia can be particularly challenging. Carers of people with dementia report higher levels of burden and stress than those caring for people with other conditions. Conversely, when well supported they provide better care to the person they are caring for and report better well-being outcomes themselves (Alzheimer’s Society, 2011)[14]. When delivering a preventative approach carers of people with dementia should be a priority group for targeting assessment and the provision of support.

Domiciliary care providers should work in partnership with carers to support the person with dementia and the carer.

Complex needs

Even when the focus of support has been on problem solving, offering flexible responses, including telecare provision, and seeking to understand behaviour and address any unmet needs, the person with dementia may develop symptoms that lead to high levels of risk for themselves or for people around them. This may include, for example, extreme disinhibited behaviour or aggression or when the person with dementia confuses night and day to such an extent that carers can become exhausted. These types of behaviour can make it extremely difficult to care for people, whatever the setting, but particularly when they live in their own home with or without a carer. They can also have a significant impact on the cost of support, particularly where night time support is required, or the frequent input from highly skilled workers.

Person-centred care

The person-centred philosophy of care that has been championed over recent years in supporting people with dementia strongly reflects the broader personalisation agenda.

Dawn Brooker (2006)[15] defines person-centred care as care that values people regardless of their age or cognitive ability; it is individualised, recognising that each individual is unique; includes the perspective of the person with dementia as central to all care planning; values the person as being able to live a life that has meaning and provides a supportive social environment to enable people to experience relationships.

May, Edwards and Brooker[16] write that person-centred care is more than being nice or kind; it requires the whole community of people in which the person with dementia is living to pay special attention to the quality of all relationships, to preserving personhood, promoting inclusion, reducing disability and responding to behaviour on the basis that something important is being communicated.

Communication is a basic human need and when verbal skills deteriorate actions become a vital way of communicating. Many people with dementia have to rely more on using actions or behaviour to do this.

It is important to take a problem solving approach and understand behaviours that we are finding challenging as expressions of physical or emotional discomfort. For example, understanding someone’s life history and how they have coped with events in the past can be helpful in discerning what might be affecting a person with dementia and lead to possible solutions.

Conclusion

The challenge faced by domiciliary care commissioners and providers is to ensure that the support provided for people with dementia and their carers truly reflects this person centred approach, offering best dementia care practice and fully living up to the principles of personalisation.

South West Dementia Partnership1

[1] HM Government (2007). Putting people first: A shared vision and commitment to the transformation of adult social care. HM Government, London.