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After having thought about it for more than one year, I’ve concluded that the term ‘living well with dementia’ is not the right one. For a start, it implies some objective, sometimes unattainable, standard. Also, I feel that some people are clearly not well with dementia with the dreadful state of post-diagnostic care and support in some parts of the country, or personal symptoms which are difficult to manage (not living well with dementia from a lack of ability to communicate verbally, or intense ‘night terrors’). Each person living with dementia is more than the dementia, and I am mindful of not projecting an over sanitised portrayal of the dementias.
Somebody I truly admire in her work and general campaigning on dementia is Beth Britton. Beth has already made a huge impact in the co-production group at the CQC, and will, I am sure, make a massive impact on the Carers’ Commission. Having founded D4Dementia in May 2012, the blog was a finalist in the Roses Media Awards 2012 and has developed a huge following in the UK and internationally. The blog is genuinely loved and supported by thousands of families, carers, people with dementia, health and social care professionals, policy makers, leaders and anyone looking for a highly informative, personal and authoritative perspective on dementia.
I will publish my book ‘Living better with dementia: looking to the future’ later this year (around June – July 2015) with Jessica Kingsley Publishers. I feel that this book, although adopting both a domestic and international viewpoint, fits in very nicely with Beth’s corpus of impressively high quality work.
Chapter 1 provides an introduction to current policy in England, as it currently stands, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This has been a vocal concern of Baroness Sally Greengross, the current Chair of the All Party Parliamentary Group for dementia.
In England, the issue of the ‘timely diagnosis’ is an exquisitely sensitive one.
We’re lucky Beth, Ming Ho and Sal Marciano have contributed to this debate: viz:
Other carers, Beth Britton, Sally Ann Marciano and Ming Ho contributed their experience emphasising that support is essential and that good outcomes for the whole family, in addition to those of the person with dementia, should be taken into consideration.
This chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run very successfully by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. It was intended that this campaign should help to mitigate against stigma and discrimination that can be experienced by people living with dementia and their caregivers. The ‘proof of the pudding’ will come when the outcome of turning communication into action is assessed objectively.
Chapter 2 comprises a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explains the urgency of the need to “frame the narrative” properly. This chapter also introduces the “Dementia Alliance International” group, which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.
It is hoped that openness in discussion will help to mitigate against a deeply entrenched stigma by some.
As Margaret Thatcher joins the many people with dementia who have passed before her, and debates rage about her political legacy, I would argue that this is a time to talk as openly about her most recent experiences as it is to reflect on her career. An opportune moment for us all to think about what having dementia means, whether you are a former prime minister, a doctor, a professor, a grocer, a bus conductor or a refuse collector. Dementia brings a whole new meaning to being ‘all in this together’.
Chapter 3 looks at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with intellectual difficulties. Attention is paid to the various intricate ways in which exact culture can impact not only on the timely diagnosis of dementia but also in the post-diagnostic care.
Chapter 4 looks at the issue of how different jurisdictions around the world have formulated their national dementia strategies. Examples discussed of countries and continents are Africa, Australia, China, Europe, India, Japan, New Zealand, Puerto Rico and Scotland. There is remarkable convergence in the efforts of various jurisdictions, and it is here I first introduce the critical importance of collaboration. A major plus here has been the contribution of the Alzheimer’s Disease International in their work on the need for national dementia policies, and how to implement them.
Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia. There is a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. An example is discussed of how the policy of ‘Big Data’ had gathered momentum across a number of jurisdictions, offering personalised medicine as a further potential component of “person-centred care”.
This chapter also considers the impact of the diagnosis of younger onset dementia on the partner of the person with dementia as well. It can never be considered that a diagnosis is given in isolation:
As Beth remarks,
For us, devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed, inevitably making mistakes along the way, but always trying our best to understand what his life was like and what he needed. Through the work I do now, I aim to use that knowledge to improve the lives of all those who are touched by dementia, increasing awareness and education in society as a whole, and transforming the care given to people with dementia and their families.
A candid description in my book was also given about the possible sequelae of the diagnosis of young onset dementia on employment, caregivers, and in social isolation.
Chapter 6 focuses on delirium, or the acute confusional state, and dementia. It attempts to explain why delirium and dementia might converge in policy, after all. There are general issues of whether it is possible to inject incentives into the system at critical points. However, in parallel with this, there is an active debate as to why delirium (however so labeled) is not picked up sometimes in hospital, why people who experience an episode of delirium can do quite badly in the long run, and what to do in the special case of a person living with dementia with delirium superimposed on that.
Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about the length of this chapter, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year.
Beth comments that:
Most carers are totally unprepared for what caring will involve and have no idea when their caring role will end. They often ‘fall into’ caring, simply by taking on small responsibilities that escalate, triggering experiences that untrained family carers can find very difficult to cope with.
There is huge interest internationally in the subject of ‘what makes a good care home’, as Beth comments:
For me the gold-standards that every family should be looking for from a care home are person-centred care, compassion, dignity and respect. You want to know that your loved one will be treated as an individual in every possible aspect – not just another box to tick on a care plan. You also want to know that they will have access to anything and everything that constitutes therapeutic dementia care, and not just a range of set ‘activities’ that they have no interest in participating in.
The idea of families and professionals working side by side is a very powerful one.
Beth takes this idea up here:
This shows that when families and professionals work side-by-side it often creates a unique, and holistic, model of care. Relatives can also benefit from the support and knowledge that professionals caring for their loved one can provide in challenging times.
It should never be the case that those who have spent years being educated in their subject feel that their clinical training and evidence based approach carries greater weight, or that families adopt the viewpoint that their emotional ties and personal experience is all that is needed to effectively care for their loved one.
In my book, an overview of how patient-centred care is different from person-centred care is given, and how person-centred care differs from relationship-centred care. I feel, personally, that the literature has thus far excessively focused on the ‘dyadic relationship’ between the person with dementia and caregiver, but a need to enlarge this to a professional in a ‘triangle of care’ and extended social networks was further elaborated and emphasised.
Different care settings are described, including care homes, hospitals – including acute hospital care, and intermediate care. This chapter first introduces the critical role of clinical nursing specialists in dementia in providing proactive case management in a person-centred care philosophy.
Britton has her suspicions about the events that led to this crisis, but she is unable to prove them. Based on that experience, she supports the idea of CCTV in care home rooms on an opt-in basis: “A camera might not have saved his life, but it would have told us what happened. However, I don’t think they should be put everywhere for everyone. We don’t want to turn care homes into a police state.”
Chapter 8 considers eating for living well with dementia. This chapter considers enforceable standards in care homes, including protection against malnutrition or undernutrition. The main focus of the chapter is how people with dementia might present with alterations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia. Eating well with dementia is clearly not all about finger snacks and the such like.
Chapter 9 looks at a particular co-morbidity, incontinence. Focusing on the various co-morbidities will be an opportunity of a whole person approach for a person living with dementia, during health as well as illness. The emphasis of this chapter is on conservative approaches for living well with dementia and incontinence. Other issues considered here are the impact of incontinence on personhood per se, and the possible impact on the move towards an institutional home.
Incontinence for a person living well with dementia is not all about pads. We have to, as a society, wish to talk about incontinence for people living with dementia, and I am hoping this chapter is a help.
I feel Beth has been instrumental – in her work – in breaking down societal taboos, for example:
How do you feel about the idea of needing someone to dress you, wash you, help you to the toilet or change your incontinence pads, feed you, give you medication, move you around, and enable you to watch the TV programmes of your choosing or listen to the music that you love?
This is day-to-day life for the many people who receive care. Such dependence can happen at any age, but it becomes more likely as you get older, making the need for care something people fear the most as they approach their mature years.
Chapter 10 argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service in the form of “whole person care”. This chapter provided the rationale behind this policy instrument in England. This chapter argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service. Currently too many NHS patients cannot be discharged out of social care in a timely fashion.
We certainly do need to be looking forward to the future now.
As Beth says,
In 15 years’ time we must have a health and social care system that is (finally) fully integrated. The UK should be leading the way in providing aged care, and recognising and fully supporting the role of family carers. More broadly, I want to be living in a society that makes ageing something we embrace and nurture, not something to be sneered at, marginalised and locked away.
Chapter 11 considers the importance of the social determinants of health. The framework, I argue, is eminently sensible for organising one’s thoughts about dementia friendly communities. The focus of this chapter is housing. I focused on design of buildings in my previous book ‘Living well with dementia’, but I wished to articulate here the wider context of the importance of housing for a person living well with dementia. Housing for living well with dementia is not just about buildings, and is pivotally enmeshed with the person centred care philosophy of projected English policy.
With such a broad brush tool as equality and “dementia friendly communities”, the scope for squashing diversity is enormous. Few topics enter the realms of “one glove does not fit all” to the same degree as the potential use of global positioning systems for dementia. Chapter 12 considers whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter is the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones. A central theme of this chapter is what might be best for the piece of mind of the person in a caring role might not be entirely synchronous as the wishes of the person himself or herself with dementia. To show how extreme the term “wandering” potentially becomes, I am aware of some friends of mine living with dementia who simply wish to go for a pleasant walk, but are frightened of being labeled as “wanderers”.
Chapter 13 considers head-on a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets is discussed. This policy strand is indeed very complex. The chapter progresses to consider a number of legal issues which are arising, including genetic discrimination in the US jurisdiction, dementia as a disability under the equality legislation in England, and the importance of rights-based approaches for autonomy and dignity.
Nonetheless, “personalisation” remains a powerful strand in policy across many successive governments.
As Beth notes – in an apolitical way:
The first and most important thing to stress is that everyone is an individual, so what works for one person won’t work for another. True quality of life is only achieved through personalisation, therefore it is vital that everything you help someone with dementia to do, achieve or enjoy is what they have or would choose for themselves.
Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Persons living better with dementia wish to contribute effectively with the outside world, and the feeling is mutual. Chapter 14 is primarily concerned with art and creativity, which can be incredibly empowering for some people trying to live better with dementia. This chapter takes as its focus on how living with dementia could lead to art and creativity. This chapter also looks at the exciting developments in our understanding of the perception of music in people living with dementia, and why music has the potential to enhance the quality of life for a person living well with dementia through its intrinsic features as a reward.
Too often the focus in international policies is on medications.
I believe the interest in ‘reminiscence’ is very well deserved.
Beth describes it thus:
Dad’s room was filled with pictures, cushions depicting farmyard scenes and life-like soft toy animals – everything chosen because it told some part of his story. At the heart of that was dad’s memory box displaying captioned photographs charting dad’s life from his birth to mine, alongside emblems that represented his home county and favourite football team.
All of these reminiscence therapies combined to keep dad’s identity alive, much in the same way that resources like Memory Bank can do for people who are living with dementia today. These aids help to focus on the uniqueness of the individual, and provide focal points for conversation that ensure each person’s story is brought to life.
Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considers the cognitive neuroscience of the phenomenon of this triggering, and presents a synthesis of how the phenomenon could be best explained through understanding the role of emotional memory in memory retrieval, how autobiographical memories are represented in the human brain usually, the special relevance of faces or even smells such as “Bovril”. The triggering of football memories may have some neuroscientific commonalities with the triggering of musical memories, and it will be interesting in the future to identify carefully which people living better with dementia benefit from such reminiscence approaches.
Chapter 16 looks at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research. This policy goes through the current evidence for this evidence in particular detail, and considers how culture change may be effected internationally for quality in this policy area. This chapter tries to convey the complexity of the issue, and to explain in a fair way why deep down in this policy plank are traditional concerns to do with ‘continuity of care’ and ‘valid consent’.
Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. I first introduce the need for this in Chapter 2. Chapter 17 considers who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia. This chapter considers how change might be brought about from the edge, how silos might be avoided, the issue of ‘tempered radicals’ in the context of transformative change to wellbeing as an outcome; and finally how ‘Dementia Champions’ are vital for this change to be effected.
Finally, I attempt a Conclusion at Chapter 18.