Social and demographic changes and advances in acute medicine are leading to an ageing population. Many, perhaps most, people will now live for significant periods with long-term health conditions and illness. There are over one million people with dementia currently living in the UK, at an estimated annual cost of £26.3 billion to society with the average cost being £32,250 per person per year. The estimated breakdown of this cost is £4.3 billion spent on healthcare, £10.3 billion on social care (publicly and privately funded) and £11.6 billion contributed by the work of unpaid carers of people with dementia.
Social and demographic changes and advances in acute medicine are leading to an ageing population. Many, perhaps most, people will now live for significant periods with long-term health conditions and illness. There are over one million people with dementia currently living in the UK, at an estimated annual cost of £26.3 billion to society with the average cost being £32,250 per person per year. The estimated breakdown of this cost is £4.3 billion spent on healthcare, £10.3 billion on social care (publicly and privately funded), and £11.6 billion contributed by the work of unpaid carers of people with dementia.1 It is projected that the total number of people with dementia in the UK will increase to over 2 million by 2051.
Alongside a continuing search for effective treatment and prevention, there has been a growing interest in how to live and how to ‘live well’ with long-term, incurable health conditions. This has been accompanied by increasing recognition of the value of enabling people to become actively involved in their own care and illness management as a route to enhanced quality of life.
Mental health services for working-age adults have embraced this with approaches emphasizing recovery, self-management, personalization, and inclusion. There is growing interest in exploring the potential benefits of applying these principles in the context of person-centred services for older people,2 but the tools, guides, and evidence have yet to be established to support service development in dementia care. The Royal College of Psychiatrists has recently published training guidance advocating a convergence of several values-oriented approaches, including ‘Recovery’, as Person-Centred Care.3
This chapter considers the possible benefits and applicability of the recovery-oriented principle of supporting people with dementia and their carers in self-management. (See Chapter 15 for a fuller discussion of the recovery model of care.)
Dementia is a general term encompassing conditions that cause global deterioration of higher cortical functioning. Alzheimer’s disease, the most common form of dementia, causes short-term memory loss with decline in speech, comprehension, judgement, and personality as the illness progresses. This leads to a decline in the ability to carry out day-to-day tasks and ultimately, through progressive deterioration, to death. There is no cure for dementia, but treatments, both medical and psychosocial, aim to reduce distress and improve quality of life.
Current policies promote personal and therapeutic approaches that focus on how to live well even in the context of an incurable and progressive disorder.4 The importance of early diagnosis and intervention to improve care and treatment in a cost-effective way is emphasized. There has been a 56% rise in the number of people diagnosed with dementia in the UK from 2010 to 2015/16 (www.dementiastatistics.org). The introduction of drug treatments such as the acetylcholinesterase inhibitors has increased the referral rates from primary care, but there are still some people who are not aware of their diagnosis and are therefore unable to be actively involved in decisions about their care. This was recognized by Tom Kitwood, who identified the ‘malignant social psychology’ that dominates from the early stages of dementia and serves to disempower the person and take away their right to make choices and decisions about their condition.5 Although taking care to avoid ‘romanticising’ dementia, Kitwood wanted to emphasize the ‘human functioning such as relationship, emotion and sensation’ that still remain important in every individual, rather than primarily focus on cognitive and other deficits when considering people with dementia.6 He described this humanistic emphasis as a form of ‘personal growth’ and ‘positive change’ that can occur over the course of an advancing dementia.
The current national mental health outcomes strategy, No Health Without Mental Health, is oriented around six aims, the second of which is that ‘more people will recover’.7 In clarifying what it means by ‘recovery’ the strategy notes that this has acquired a specific meaning in mental health, which is based on Anthony’s almost universally accepted definition of personal recovery:
A deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful and contributing life, even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life.8
The strategy also underlines the broad applicability of the values and vision of this definition across the scope of this ‘all age’ approach by noting that, ‘Although the term is not used in relation to children and young people, the underlying principles of the recovery approach are equally applicable’ (footnote to p. 16).7 But, the question remains whether it is legitimate or helpful to talk about recovery, so defined, in dementia care.
In Chapter 15, we (L.H. and G.R.) note the close parallels between the values, principles, and practices of person-centred care in older people’s mental health and those of recovery approaches commonly used in mental health services for working-age adults.2 We also acknowledge the difficulty of reconciling the word ‘recovery’ with the care of people with progressive and deteriorating conditions. However, the basis for Antony’s definition and the recovery approach in general centres on recognizing that you can have an illness and yet be well, and that clinical variables such as symptoms are only loosely related to personal variables such as quality of life, hope, happiness, and satisfaction. Moreover, the loose coupling between the presence of illness and experience of well-being provides a possible rationale for working to preserve or enhance well-being even for people with persistent or advancing illness. This has been a guiding principle in hospice care for many decades.
However, it may strain conceptual credulity to breaking point to call this recovery. Seeking to develop a recovery-oriented approach to dementia may risk offering false hope of cure and alienate the very people who could gain much from support for active engagement in optimizing quality of life. This does not mean that the fundamentals of the recovery approach do not apply in dementia care, as the values, principles, and many of the practices clearly do, but it does acknowledge the limits of using the word ‘recovery’ to describe this. Fundamentally, the important issue is in developing approaches that are useful and experienced as helpful by the people we seek to serve.
Daley et al. sought to evaluate whether a conceptual framework of recovery developed for working-age adults holds value for older people with mental health problems, including those with dementia.9 They found that the fundamental principles of recovery had resonance with older people and that taking a recovery-oriented approach was acceptable within the limitations of the concept. They also identified similarities and differences. Working-age adults and older people similarly gave emphasis to the impact of having a mental health problem, the importance of personal responsibility, the value of coping strategies, as well as self-help information, and of feeling connected to others and their community. However, older people, including those with dementia, sought to cope with their difficulties, not so much by seeking a new sense of meaning and purpose, but through a desire for stability and a wish to ‘continue being me’, which was associated with the importance of holding on to an established and enduring sense of identity.
They also found that older people were much more likely to associate with and seek support from family rather than peers, and there was a routine need to consider the impact of living with coexisting mental and physical health problems and to develop coping strategies for both.9 For people with dementia there was an additional need to include the changing experience of the condition over time and the increasing need for support from others as mediators of well-being.
Overall, there was a close correspondence between their findings9 and the principles of recovery identified by service users in seminal papers on the subject,10, 11 including key components of sustaining hope, maintaining control over life and symptoms, and creating opportunities to build a life beyond the illness, which are equally applicable to people living with dementia and their supporters. This ethos is also advocated by the Social Care Institute for Excellence which, when considering the needs of older adults with mental health problems, states that:
‘Recovery’ and well-being approaches to mental health issues developed by younger adult service users and working-age mental health services are equally applicable to older people (p. 19);12
Recovery is […] making it possible for people to have quality of life and a degree of independence and choice, even those with the most enduring and disabling conditions (p. 20).12
Historically, much of our effort in seeking better outcomes has come through developing better treatment, where effectiveness is largely measured in terms of symptom reduction and improvement attributed to high-fidelity concordance with taking or receiving the treatment itself. More recently, there has been a growing interest in the contribution people themselves can make to their own health and well-being through becoming active participants rather than passive recipients. The Salzburg Global Seminar went as far as to describe actively participating patients as ‘the greatest untapped resource in healthcare’.13 Enabling people to take an active stance to ward their own health and well-being through supported decision-making and self-management planning has emerged as a major emphasis in recovery-focused approaches.14, 15, 16
Self-management has an established role in recovery-based care and was highlighted through the NHS plan as one of the key building blocks for a patient-centred health service.17 It features as a key component in the White Paper Our Health, Our Care, Our Say and in Supporting People with Long-Term Conditions to Self Care.18, 19 It has been adopted at local and national levels in skills training programmes (Expert Patients Programme self-management courses) and condition-specific patient education programmes, for example, DESMOND for type 2 diabetes (www.desmond-project.org.uk). Targeted investment in self-management interventions can increase people’s confidence in managing their health and well-being and improve their quality of life and, collaterally, there is a possibility of additional economic benefits for the NHS.20, 21
Self-management can be defined as ‘the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition’.22 It focuses on empowering patients to manage their own conditions by increasing their knowledge and involvement in their care,23 and has been associated with a range of highly desirable benefits as described in Box 14.1.
Increases quality of life
Increases social activation and promotes new friendships
Helps the person become more aware of resources in their social environment
Gives the person skills to manage their dementia
Helps the person with decision-making
Increases self-efficacy and mastery over one’s life
Reduces the psychological distress associated with the condition through helping the person to manage the emotional consequences of the disability
Increases knowledge about the condition
Self-management strategies have been developed as a response to enabling people to live more satisfactorily with recurrent or long-term conditions. Dementia is a long-term condition, yet very little is known about the efficacy of using self-management approaches with this population. Mountain, in a review of issues about selfmanagement and dementia, argues that in order to adapt self-management for people with dementia, several issues would need to be considered such as problem-solving, information-sharing, locating local resources, making an early diagnosis, supporting the impact of the diagnosis, and focusing on the person’s changing needs.24
In a randomized controlled trial (RCT) of 136 couples in Finland, the effect of self-management group rehabilitation for people with dementia and their spouses was investigated.27 The groups met over eight sessions and the aim was to enhance self-efficacy and problem-solving skills and to provide peer support. This group-based psychosocial intervention focusing on promotion of self-management skills for people with dementia and their spouses demonstrated beneficial effects on the Health Related Quality of Life (HRQoL) scale for spouses. It also had a positive impact on the cognition of people with dementia (using a verbal fluency test and the clock drawing test) comparing data at baseline with three and nine months post-intervention. These effects were achieved without extra costs over 24 months of follow-up. This research suggests a new model of support for people with dementia and their families post-diagnosis.i Future studies should explore the long-term effects of this intervention.
Mountain and Craig described the development of a six-week self-management group.25 They started with a consultation process with five people with dementia and their main carers and identified seven themes: understanding dementia, rethinking dementia, living with dementia (strategies to manage memory), relationships, keeping mentally well, experiencing well-being, and keeping physically well. The final session also included a discussion on ‘what next?’ A group was then developed based on these themes and was attended by a mix of people with dementia and carers.
The group was delivered through a ‘menu-based approach’ where participants were offered choices from a number of themes and interventions tailored to the expressed needs of the group. This was highly valued by participants. Evaluation of the group also supported the need for skilled facilitation of the group by a professional with expertise in dementia care. The authors conclude: ‘self-management for people with dementia … involves moving beyond a medical construct of treatment and care to one that adopts a holistic view of the person and their needs.’25
Claire Craig then went on to develop an occupational therapy–based self-management manual for facilitators working with people with dementia.
Journeying through Dementia is an intervention that has been developed in partnership with people with dementia. The intervention focuses on ways of enabling individuals to continue to engage in activities that they find meaningful as their condition progresses.28