This book is dedicated to Charmaine Hardy.
And it is also dedicated to the memory of my late father.
Both Charmaine and my late father have taught me how special gardeners are.
Equality of well-being would ensure the exercise of fundamental citizenship rights by all citizens independent of their economic and social contribution.
[Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality, Marcia H. Rioux, 7 Can. J. L. & Jurisprudence 127 1994]
Dementia does not exist as a brand for people to make money out of during periods of austerity.
The wish for people who have been given a diagnosis of dementia to live as full a life as possible is not an unreasonable one. Anything can happen to anyone at any time. While talk seemingly has centred around ‘opportunities’ from dementia, it is very easy to see dementia as a business case.
For many people who have been given a diagnosis of dementia, they do not see their lives as ‘wrecked’ or ‘devestating’. And yet this is the language used by certain politicians who have wished to galvanise support around the dementias. But dementia is not a single condition; it encompasses about a hundred, all with different causes and outcomes. In any case, once you’ve met a single person with dementia, you’ve only met a single person with dementia. One of the great ‘opportunities’ is to see health and care systems converge on viewing a person as an individual, not simply a list of problems to be processed at high speed. But the threat to this is that “person centred care” becomes “purse centred care”, as one prominent international advocate, living with dementia, Kate Swaffer, has argued against.
I have marveled at the evolution of language regarding how people at all sorts of stages of life after diagnosis have been able to contribute to the debate. After much lobbying, there is finally a representative living well with dementia on the World Dementia Council. How they existed for so long without one is a testament to the stigma and discrimination against people with dementia, which major charities and the caring professions can unwittingly perpetuate. Certain parts of the brain are redundant in function (Glassman, 1987). But it would be utterly unacceptable for people living well with dementia simply to become window dressing in the global dementia agenda. Already pimping out expensive drugs, some of which are clearly not efficacious in some living with dementia, is not without its remarkable opportunity cost to people striving to live well with dementia, assisted to some extent by “regulatory capture” (Heller and Heller, 2013). “Reserve” is a phenomenon where the brain has a bit of lee way before functioning abnormally before anyone notices (Stern, 2012). One wonders how many people living with dementia you could lose from implementation of this policy without certain beneficiaries of the policy not being unduly affected.
The language has changed from ‘involving’ people with dementia, in a rather condrascending ‘bum on seat’ of a panel way, to people with dementia in the driving seat. But I feel that the “dementia friendly communities” policy, as globally implemented across various jurisdictions, sadly has a feeling of the “emperors new clothes” about it. It is unreasonable to object on principle to the motherhood and apple pie aspects of it, in a world which does not include or accommodate the person living with dementia.
But the policy runs the risk of homogenising people. And this is not on. It’s exactly the same criticism which “black friendly communities” faced (Cohen, 1970). Instead of promoting seamless integration, it might inadvertently promote division. A further nuance is that it is NOT ‘obvious’ from external appearance that somebody is gay. Likewise, some people living well with dementia, say the early stages of behavioural variant frontotemporal dementia, with an insidious change in behavior and personality noticed by others in the absence of any cognitive problems, may appear at first blush to have “nothing wrong with them”.
As a broad brush tool, the promotion of equality is totally in line with dementia being considered as a disability. This approach indeed provides an “opportunity”, in that employers will be legally obliged to make statutory ‘reasonable adjustments’ such as adequate signage for employees with navigation problems with early Alzheimer’s disease. But it would be unfair to park these legal requirements onto the wrong people.
It is low hanging fruit to sell “dementia friendly communities” to employers who can seek competitive advantage against the competitors in a revamped ‘Nudge’ for dementia (for neat account of the nudge doctrine in policy, the reader is directed to an excellent review by Johnson and colleagues, 2012). But this is to use dementia friendly communities as a ‘community brand’, a tamer form of the corporate brand (Füller, 2014). It is textbook diversity marketing (Murray et al., 2002). It is more of a challenge to think about how an employee living with dementia may be given an altogether different task he or she might be happier with; celebrating diversity has to be balanced against the wish of the employer to lose the employee altogether. But this represents a general societal issue of whether employment favours the employer or the employee.
The promotion of equality has always rested uneasily with the lack of promotion of diversity. The tension between the business case and social justice approaches forms a crucial point of debate in the diversity and equality field (Tomlinson and Schwabenland, 2010).
But here in policy, across a number of jurisdictions, it has become patently obvious that the needs of groups of people living with dementia, such as the BAME, LBGT or intellectual disability communities, merit special care. Furthermore, putting the spotlight on equality might mean that we produce a ‘fixation error’ by ignoring other critical aspects of law vital for the wellbeing of a person with dementia, his or her autonomy and dignity, through human rights.
It is clear that too many assumptions in policy strands are much more problematic than they first appear. For example, there seems to be legally some mythical cut off at 65 whereby people with younger onset dementia are literally excluded from dementia services. And the relentless drive to ‘successful ageing’, where all citizens have to be productive, potentially belittles the value of a person with dementia simply in terms of how much money he or she can contribute to failing economies.
The value of people living with dementia, some of whom have quite remarkable visual and artistic talents unleashed, can get somewhat strangulated by discussion by tomes of bulky cost estimates of how much ‘dementia’ is a crisis and will cost the earth in future. Such a shock doctrine approach, while well suited to fundraising and creating new markets for the multinational pharmaceutical companies, can be built on dodgy facts.
It depends how much you wish to listen to the critics of the dodgy facts or the slick pitches for the dodgy cases, of course. You might be quite oblivious to the fact that the risk factors for Alzheimer’s disease are not independent after all, and that, for example, they might be interrelated (e.g. diabetes and previous stroke). Or you might not care that if you do not die from stroke you might be contributing to the number living with dementia. And why the relentless focus on the prevention of Alzheimer’s disease almost ignoring completely studies on the overall risk factors for other common types of dementia in the younger onset age group, such as diffuse lewy body disease, vascular dementias or frontotemporal dementia?
And so on.
And, over the last year, it has been brilliant to say hello to Beth Britton, Chris Roberts, and Jayne Goodrick, Tommy Dunne, Joyce Dunne, Rachel Niblock, and Louise Langham, whom I consider special friends; a sort of “extended family”.
In this book, I should like to initiate a reboot of v.2 of “Dementia Friendly Communities”, putting the person living with dementia in the driving seat. It is difficult to reconcile campaigning for increased dividends of Pharma in the future against a social care system on its knees currently; otherwise re-articulated as the meme “care for today, cure for tomorrow”.
I hope that my book comes at a time when the focus on dementia and caregivers has become renewed across the world, in no small part due to the efforts of the Alzheimer’s Disease International which I am honoured to be on the international advisory board for (for their 2015 conference). I look forward to seeing many of my friends and colleagues in Perth, Australia, before this book is published next year. It has been an honour and privilege to review about sixty abstracts for that conference. The abstracts I read really gave me a sense of strong optimism for future research in this field.
I feel the book takes me much further into issues I barely touched upon in my first book “Living well with dementia: the importance of the person and the environment” (Radcliffe Health, 2014).
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 chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run 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.
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.
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 prior learning difficulties.
Attention is paid to the various intricate ways in which 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.
Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia, with 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. A candid description 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.
Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about this, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year. 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 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.
Finally, the importance of clinical specialist nurses in ‘dementia friendly communities’ was argued, not as some form of third sector NIMBYism, but its critical importance in proactive case management of people living with dementia when ill as well as healthy.
Different care settings are described, including care homes, hospitals – including acute hospital care, and intermediate care.
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 comorbidity, incontinence. The emphasis 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.
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. 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. This chapter provides the rationale behind the proposed policy instrument of “whole person care” in England.
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.
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 were 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.
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. Finally, the issue of engagement was considered.
Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Chapter 14 is primarily concerned with art and creativity. This chapter takes as its focus on how living with dementia could lead to art and creativity. This angle 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 is on medications. 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”.
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.
Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. This chapter 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 should like to give a special mention to Kate Swaffer. I have just heard that Kate has been recommended for the degree of Master of Science in dementia care from the University of Wollongong, Australia. It is a real honour to know Kate. Kate has informed my book like no other.
I hope you find the issues I discuss thought provoking.
The issue is not about what conferences you can turn up to, how many commissions you can get, how many courses you can flog, or how many papers you can publish on dementia.
It’s all about whether you feel you have made a real difference.
Dr Shibley Rahman
Cohen, D. (1970) Advertising and the black community. Journal of Marketing, Vol. 34 (October). pp. 8-11.
Füller, J. (2014) For us: the charm of community brands. GfK MIR , Vol. 6, No. 2, pp. 40 –45.
Glassman, R.N. (1987) An Hypothesis About Redundancy and Reliability in the Brains of Higher Species: Analogies With Genes, Internal Organs, and Engineering Systems, Neuroscience and Behavioural Reviews, Vol. 11, pp. 275-285
Heller, T, Heller, L. (2003) First among Equals?: Does drug treatment for dementia claim more than its fair share of resources? Dementia, 2, 7-19.
Johnson, EJ, Shu, SB, Delleart, BGC, Fox, C, Goldstein, DG, Häubl, G, Larrick, RB, Payne, JW, Peters, E, Schkade, B, Weber, E.U. (2012) Beyond nudges: Tools of a choice architecture, Mark Lett, 23, pp. 487–504.
Murray, JA, O’Driscoll, A, Torres, A. (2002) Discovering diversity in marketing practice”, European Journal of Marketing, Vol. 36 Iss 3 pp. 373 – 390
Rioux, M.H. (1994) Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality, 7 Can. J. L. & Jurisprudence 127.
Stern, Y. (2012) Cognitive reserve in ageing and Alzheimer’s disease, Lancet Neurol. November, 11(11): 1006–1012. doi:10.1016/S1474-4422(12)70191 6.
Tomlinson, F, Schwabenland, C. (2010) Reconciling Competing Discourses of Diversity? The UK Non-Profit Sector Between Social Justice and the Business Case, Organization 2010 17: 101.