Assets-based approaches and dementia-friendly communities

Abstract

Whilst it is possible that dementia-friendly communities simply evolve unilaterally due to various uncontrollable forces, a serious consideration, we feel, should be made to enquire whether dementia-friendly communities actually aim to promote the health of people with dementia and care partners. It is argued that an influence of the biomedical approach has been accompanied by an overly negative discourse, with a focus on symptoms, deficits and emotionally charged metaphors about dementia that have influenced the overall public perception (Zeilig, 2014). This focus may not be totally beneficial, however. In anaesthetics, ‘fixation errors’ occur when the practitioner concentrates solely upon a single aspect of a case to the detriment of other more relevant aspects (Fioratou, Flin, & Glavin, 2010). Fixation errors, indeed, are well recognised in anaesthetic practice and can contribute significantly to morbidity and mortality. With shifting the focus on how businesses might win more customers by being ‘dementia friendly’, securing a competitive advantage through ‘nudging’, other promising avenues of dementia-friendly communities, such as implementing rights enshrined within the UN Convention of Rights of People with Disabilities (CRPD) and other Conventions, might not be given proper prominence.

Even within the context of ‘communities working towards becoming dementia friendly,’ the definitions of ‘dementia-friendly’ and ‘community’ have remained somewhat diverse and even somewhat rather elusive, for example, the concept of ‘community’ may represent a place, the social and physical environments, an organisation, a group of individuals, a society, a culture or virtual communities (Lin, 2017). According to Handley, Bunn, and Goodman (2015), in order to make healthcare more ‘dementia-friendly’, a number of service areas need to be improved and kept at the same standard for any patient. These include diagnosis rates, access to care, treatment support and information, coordination of care, admission and readmission to hospital, admissions to care homes and post-diagnosis support.

Dementia-friendly initiatives share similarities with the age-friendly movement in a focus on active engagement and creating a good quality of life for older adults (Hebert & Scales, 2017). Such initiatives offer a welcoming optimistic narrative in dementia studies by embracing dignity, empowerment and autonomy to enable health and well-being throughout the life course of a person living with dementia. The ‘dementia-friendly concept’ certainly resonates with the concept of ‘age-friendly’ that was developed by the World Health Organization (WHO) in 2006 through the Global Network of Age-Friendly Cities and Communities, which refers to efforts to promote active and healthy aging, and thereby a good quality of life for older adults (WHO, 2017). Dementia-friendly and age-friendly initiatives entail a similar approach, which is the creation of supportive, inclusive and enabling environments that maximise independence through collaboration with diverse community stakeholders (Turner & Morken, 2016). Through this approach, both dementia-friendly and age-friendly initiatives also shift the narrative from deficit and burden to contribution and inclusion, and to mitigation against stigma, prejudice and discrimination (Swaffer, 2014).

But the term ‘dementia-friendly communities’ is in itself in danger of defining people merely by a diagnostic label, inadvertently encouraging segregation, and this prima facie appears to offend the fundamental principles of personhood (Kitwood, 1997). The sense of otherness is in keeping with an illness model, which can itself generate an increase in stigma and unwillingness to seek professional help (Gergel, 2014). But a focus on health, as well as illness, might help to address this imbalance. Based on the original WHO definition, health in older age is described as a life course process of optimising opportunities for improving and preserving physical, social and mental wellness, independence, quality of life and enhancing successful transitions (Hornby-Turner, Peel, & Hubbard, 2017). The life course approach is particularly useful, as it recognises that at any point in a person’s life things may go wrong. The asset approach then provides a process for understanding what is required to rebuild the confidence and self-esteem necessary for individuals to regain the motivation for doing well. The asset approach therefore must also rely on active disability support, and in the dementia-friendly communities, initiatives should therefore equate to communities being accessible and inclusive for people with cognitive disabilities, not only friendly.

At an international level, the WHO Health 2020 policy framework for health and well-being highlights the importance of creating resilient communities and strengthening people-centred health systems (WHO, 2012). An ‘asset-based approach’ recognises the potential of people’s strengths and resilience. This implies dementia-friendly communities must also be aligned to the WHO Disability Action Plan 2014–2021 (WHO, 2015), and health outcomes and disability support to maintain independent lives in the community, with equal access and inclusion to all others is therefore essential. And that in turn demands an alignment with the WHO workstream on integrated care for older people (http://www.who.int/ageing/health-systems/integrated-care/en/).

This approach would then, we feel, move the narrative for ‘dementia-friendly communities’ much more from solutions that are narrowly focused on needs towards policies and interventions that are truly redesigned around what people and communities already possess and are capable of doing. It is therefore difficult, at this present time, to escape the conclusion that dementia-friendly communities need to be explicitly linked with the assets-based approach to take dementia-friendly communities to the next level.

A ‘health asset’ can be defined as any factor or resource that enhances the ability of individuals, groups, communities, populations, social systems and institutions to create, maintain and sustain health and well-being and reduce health inequities. These assets can operate at the individual, group, community and population level as protective factors against stress, improving individual and community health and well-being and reducing preventable inequalities (Morgan & Hernán, 2013; Morgan & Ziglio, 2007). Essential to ‘dementia-friendly communities’, whatever the precise formulation, we need to consider what people living with dementia and care partners can do. Core to this is the notion of ‘intrinsic capacity’ ‘defined as the composite of all the physical and mental (including psychosocial) capacities that an individual can draw on at any point in time’ (Beard et al., 2016, p. 2149). According to SCIE (2007),

All communities are repositories of aspirations, resources, capabilities and social capital that can be mobilised and activated to improve outcomes and increase the wellbeing of their members. Local people – whether they are people who use services, carers or families – are placed firmly at the heart of asset-based approaches, as co- producers of the process. (p. 4)

It is worth noting that this inclusion of social capital cannot be, in reality, tokenistic, otherwise dementia-friendly communities ‘being led by people with dementia’ become merely marketing.

We know that various definitions of co-production make this very clear.

People’s needs are better met when they are involved in an equal and reciprocal relationship with professionals and others, working together to get things done. This is the underlying principle of co-production – a transformational approach to delivering services – whose time has now come. (Boyle, Coote, Sherwood, & Slay, 2010, p. 3)

In other words, large organisations rewarding people with dementia for their time and work would be symbolic of this; paid positions for ‘consumers’, including people with dementia and care partners, would be a minimum gesture. Assets could be and should be a focus of integrated care plans.

As we learn more about the importance of social determinants of health (or inequalities) – describing how poverty, neighbourhood, access to healthy food and education, all play important roles in health, it is important to learn how to harness fully local community assets and influences on health through education (Warnecke et al., 2008), and both professionals and practitioners could be actively involved in building resilience for ‘dementia-friendly communities’. The asset approach, instead of reacting to problems, focused on illness, and done to people with dementia (as in the deficit model), fosters an approach of fostering strengths and assets to prevent problems, concentrates on well-being and positive health, and actively embraces people with dementia and carers as co-producers of health outcomes (Rippon & Hopkins, 2015). It is worth considering that the ‘Marmot Review’ identified six policy recommendations to reduce health inequalities, including creating ‘healthy and sustainable places and communities’ (Marmot, 2010). The links that connect people within communities provide a source of resilience, access to support, opportunities for participation and added control over their lives; they have the potential to ‘contribute to psychosocial well-being and as a result to other health outcomes’.

Connectedness, networks, trust, reciprocity and feelings of belonging are important assets and the social glue that binds people and places together, and this call to action in citizenship was indeed a central driver originally in the Prime Minister’s Dementia Challenge (2012) (Department of Health, 2012). Social connectedness includes living arrangements, size of social networks and engagement in social activities. Perceived social isolation includes perceptions of social support, as well as feelings of loneliness (Cornwell & Waite, 2009). Results from translational studies have shown that modifiable lifestyle factors – including physical activity, cognitive engagement and diet – are a key strategy for maintaining brain health during aging; for example, physical activity and diet modulate common neuroplasticity substrates (neurotrophic signalling, neurogenesis, inflammation, stress response and antioxidant defense) in the brain, whereas cognitive engagement enhances brain and cognitive reserve (Phillips, 2017). Prevention of further deterioration is undoubtedly an important product of the promotion of assets in individuals and communities, reinforced by guidelines. The recent NICE guidance (NG16) guideline ‘Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset’ specifically includes recommendations on promoting a healthy lifestyle to reduce the risk of or delay the onset of disability, dementia and frailty by helping people to: stop smoking, be more active, reduce alcohol consumption, improve diets and lose weight and maintain a healthy weight if necessary (NICE, 2015; https://www.nice.org.uk/guidance/ng16).

We know that many people can experience quite a profound isolation after communicating their diagnosis of dementia to others. Social health acknowledges that the person can experience well-being despite a medical condition by maintaining a dynamic balance between opportunities and limitations in the context of social and environmental challenges (Huber et al., 2011). This approach is not new to dementia (Droes, van der Roest, van Mierlo, & Meiland, 2011), but recently has become more prominent by the proposition of Huber et al. (2011) to reformulate the WHO definition of health with a focus on the ability of people to adapt and self-manage when living with a chronic condition. The three dimensions of social health are ‘the capacity to fulfil one's potential and obligations’, ‘the ability to manage life with some degree of independence’ and ‘participation in social activities’ as described by Huber et al. Assistive technology devices for people with memory deficits are sometimes referred to as ‘assistive devices for cognition’, which are defined as ‘any technology which compensates for cognitive deficit during task performance’ (Gillespie, Best, & O'Neill, 2012, p. 2).

However, the emergence and development of Dementia-Friendly Communities and Dementia Friends programmes could be seen as another paternalistic way of ‘supporting’ those who are diagnosed with dementia, as well as at worst contributing to the stigma, as the approach ensures they have to ‘come out’ about their diagnosis. Furthermore, the acclaimed ‘experts’ employed in these global initiatives are very often people without dementia. Until we start employing people with dementia in these programmes and initiatives, the stigma, stories and myths will continue that people with dementia do not have sufficient capacity to be equally and meaningfully engaged in these initiatives. Although dementia-specific villages, shopping lanes and memory cafés for people with dementia could be seen as causes célèbres, these places may simply be yet another form of segregation and insist on people having to ‘declare their illness’ by using these services. Imagine if we had dedicated cafés and shopping lanes for cohorts with cancer, mental Illness, AIDS, diabetes, heart disease, people from the LGBTIQ community, or indigenous groups such as Aboriginal Australians? There would, quite justifiably, be broad community outrage.

The continued placement of people with dementia into assisted living, which are secure residential units exclusively for people with dementia, is also segregation based on an illness. The motivation for this appears to have been organisaional risk management and convenience, but this is again an approach focused on deficits, rather than supporting a person’s remaining assets. The only other cohort to be locked away is the convicted criminal. And whilst ever segregation of any kind continues, and the initiatives are ‘about us, without us’, many people with dementia continue to ask, how is a genuinely ‘dementia inclusive’ world achievable? A world suitable for a person living with dementia should ideally be a world suitable for anyone; dementia rarely travels alone and dementia is associated with several other co-morbidities (Banerjee, 2015). Besides, most people agree on the need not to define people by diagnostic labels, an action which potentially offends personhood (see, for example, Nolan, Davies, Brown, Keady, & Nolan, 2004).

The Kiama Dementia Friendly Community initiative in Australia is the only one globally to have been recognised by the WHO, and they initially employed a person with dementia in the project, and the Southern Dementia Advisory Group (a group of local people with dementia, supported by friends and family) is at the heart of the work. The Dementia Friendly Kiama Pilot Project Evaluation 2016 (http://dementiaillawarra.com/wp-content/uploads/2016/12/DFK-Evaluation-Flyer-WEB.pdf) reports some aspects about the recognition and success of this project. They engaged people with dementia and their care partners from the beginning, a person with dementia was employed in the project, they have continued to find funding to employ a dedicated project officer, and they only deliver training that has been reviewed and approved by people living with dementia.

In a sense, the ‘dementia-friendly communities’ were possibly ‘ahead of their time’. The United Nations Sustainable Development Agenda offers an opportunity to realise the right to health for all. The significance of the sustainable development goals (http://www.un.org/sustainabledevelopment/sustainable-development-goals/) lies in their ability to move beyond a biomedical approach to health and healthcare, and instead to seize the opportunity for the realisation of the right to health in its fullest, widest, most fundamental sense: the right to a health-promoting and health protecting environment for each and every one of us (Hawkes & Buse, 2016). A call for action on the re-framing of ‘dementia-friendly communities’ has already been made by Dementia Alliance International, the international stakeholder group of people with dementia, working in autonomous partnership with Alzheimer’s Disease International. They comment that, ‘If our deficits are what are focussed on, then we will never transform the way the world thinks, acts and talks about the condition’ (https://www.dementiaallianceinternational.org/dementia-friendly-communities/).

Some of the questions to do with dementia-friendly communities are bound to become rather awkward. Nonetheless, a serious attempt to embrace assets-based approaches is therefore critical to a renewed articulation of ‘dementia-friendly communities’ towards communities that are inclusive and accessible (for all) and would also help to break down the barriers of the silos that the main stakeholders have found themselves in. A reframing of dementia-friendly communities, using a strong assets-based foundation, would work especially well if all disability organisations formed a coherent network making sure that the sustainable development goals, the WHO Disability Action Plan, the WHO Action Plan for Dementia: A Public Health Response, Community Based Rehabilitation and the UNCRPD and other Conventions (https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/the-convention-in-brief.html) are fully implemented.

Health and ‘living well’ are intimately related to one another.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Shibley Rahman is an academic physician interested in the integration of services for long-term conditions, especially dementia and frailty.

Kate Swaffer is a prominent global advocate living with dementia, is on the board of the World Dementia Council and is a PhD candidate at the University of Wollongong, Australia. Kate is also CEO of Dementia Alliance International.

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