Kate Swaffer

Dementia: Stigma, Language, and Dementia-friendly:

The incidence of dementia worldwide is rapidly increasing and Alzheimer’s Disease International (ADI) (2013) reported that ‘there are 7.7 million new cases of dementia each year, implying that there is a new case of dementia somewhere in the world every four seconds’. In Australia, there are over 332,000 people diagnosed with dementia, with an estimated 1700 new diagnoses per week (Alzheimer’s Australia, 2014c). As the incidence of dementia rises globally, the rate and scale at which it is currently escalating has forced governments to make it a health priority, and from a consumer’s perspective, it is therefore very timely to re-consider the language being used to represent people with dementia and its impact on stigma. I have also considered the presence of stigma within the stigma literature, and wonder if the presence of stigma towards people with dementia, within the dementia and stigma literature, exacerbates the stigma, or prevents the timely translation of good research into better practice. Finally, I will briefly discuss the concept of a dementia friendly community, and the challenges this presents to me as a person living with younger onset dementia.

Dementia and Prescribed Disengagement

Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagement, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left? This Prescribed Dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive. Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’. The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr. I was forced to give up paid employment after having my driver’s license revoked, but continued to study at university. If the symptoms of dementia had been seen as disabilities, my employer would have been legally obliged to find an alternative position, with the appropriate disability support. Studying meant I needed to use a lot of strategies to be productive, helped me remained focused on meaningful activities, and importantly, away from the focus of dementia. It increased my neuroplasticity and resilience and allowed me to define myself by something other than dementia. Thankfully, at university, people with

Reflections and Recommendations for Conducting In-Depth Interviews With People With Dementia

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

Assets-based approaches and dementia-friendly communities:

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.

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners:

The aim of this study is to systematically review practitioners’ practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as ‘memory problems’ are more often used to describe dementia than medical terms. Practitioners’ decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including level of awareness, level of severity and family support; (c) the health and social care system including access to specialist and diagnostic services, reimbursement for diagnosis/management and availability of services and (d) cultural norms in relation to dementia including stigma, labels, and common clinical practice. The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions. Multicomponent approaches to address these practices could include guideline development, practitioner education, anti-stigma public health campaigns, offering post-diagnosis treatments and support and sufficient reimbursement for practitioners for time spent managing dementia.

Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

In December 2014, I came across one of my own poems on Twitter titled ‘Lost’ (2010, 2012) that appeared to be attributed to other authors, although I wish to state clearly in no way was it unethical in the research process or the way it was cited and in no way did this pilot study then published by Petrescu, MacFarlane, & Ranzijn (2014) breach any ethical protocols. The way the poem was published on Twitter was what caused me to notice it in the first place, which was as ‘‘‘Lost’’ (Petrescu & McNab)’, rather than as the author [me] who owned the creative copyright. This Editorial is not considering the ethics of using people with dementia in research, as that is clear in the literature. It is important to note that this was not the case in the poetry pilot project, and the researchers treated all participants with the utmost respect and adhered to all ethical and other protocols. The way my poem appeared on Twitter, is what highlighted not that researchers are not following strict research ethic protocols, but rather, people who are engaging with people with dementia, outside of formal research may not be considering them. Specifically, it will consider the creative and intellectual copyright or ownership of people with dementia in general, and whether this issue has been neglected, or even considered as a valid concern. Almost all others providing intelligence or creative to a piece of work receive full credit, and most often also are paid for their contribution. This is not happening to people with dementia, and all too often, we are still listed on documents as ‘People/person with dementia’, just as we are too often still listed that way on a conference or event program. It is not only offensive it is disabling and stigmatising to be nameless and undervalued, and it is my hope this article opens the door to a more morally and ethically considered approach to how people with dementia are being ‘engaged’ beyond formal research. People with dementia are rarely funded to be the people standing on the podiums at conferences and events presenting the work, missing out on the full acknowledgement of their sometimes vast contributions given for free or almost no payment other than being