Living positively with dementia: findings from a qualitative systematic review

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Considering the effects that dementia has on one’s day-to-day life, it is no wonder that most research and media articles talk about dementia in a (very) negative light. Just think about how it can cause memory problems (Belleville et al., 2007), problem behaviours such as changing appetite or aggression (Risco et al, 2015) and increasing reliance on others to complete daily tasks such as cooking (Giebel et al, 2014). More so, these symptoms can be stressful for those people caring for someone with dementia, such as spouses or children (Sutcliffe et al, 2015).

But there are ways to live positively with dementia. On the one hand there are medications to delay the progression of the condition, and a lot of research is also going into teaching carers skills to better cope with difficult situations (Moniz-Cook et al, 2008). In fact, Dr Shibley Rahman has dedicated an entire book to living better with dementia.

Whilst dealing with the changes that the condition can have on one’s life, it is important to focus on positive ways in which one can experience life with the condition. Sporting Memories for example, is a network that allows you to reminisce about your favourite sports or a favourite olympic games from years ago.

In this blog, I am going to discuss a recent systematic review and synthesis of the qualitative literature on living positively with dementia, by Wolverson, Clarke and Moniz-Cook from The University of Hull (Wolverson et al, 2015).

This review focused on ways to live positively with dementia.

This review focused on ways to live positively with dementia.

Methods

The authors performed a systematic review, searching standard databases such as MEDLINE, CINAHL and PsychINFO. The search terms included ‘dementia’ and ‘Alzheimer’s’ together with terms such as ‘well-being’ and ‘coping’ and positive terms such as ‘happiness’ and ‘hope’. Some of the exclusion criteria were studies published in a language other than English; studies relating solely to people with young-onset dementia; and studies who prioritised the perspectives of carers or professional staff as opposed to those of people with dementia.

As it is very good practice to also assess the quality of the included studies, the authors used the Methodology Checklist for Qualitative Studies to evaluate the clarity and reported aims; study design; methods; rigour of data analysis; and validity, relevance and critique of findings.

Thematic analysis was used to analyse the findings. To be precise, two of the authors read the findings from each included paper first in isolation, and then jointly, to extract the themes from each study. These themes were then recoded into broader descriptive themes.

Thematic analysis helps researchers pinpoint, examine and record patterns (or "themes") within the data.

Thematic analysis helps researchers pinpoint, examine and record patterns (or “themes”) within the data.

Results

Initially 424 qualitative articles emerged from the database search, of which only 31 articles met the inclusion criteria. Of these, 4 were excluded because of their poor methodology, so in the end 27 studies were included in this review. Most of these studies were rated as adequate, whilst five were considered to be of strong quality and three of poor quality. Upon reanalysing the data in the included studies, the authors identified three key themes on the positive experiences of living with dementia.

1. Engaging with life in aging

This theme could be applied even to younger adults, as it discusses how to positively engage with live in general, such as reading, doing art or listening to music. The aspect of keeping going is obviously more specific to older populations, in that the authors found that people in the studies describe doing activities, even if that may be doing the cleaning!, in order ‘to keep going’ and just getting on with life. As the overarching theme says, this is specific to aging or life in general and not necessarily directed only at people with dementia. Anyone can seek enjoyment from these kinds of activities, regardless of age. One person said:

All the while I’m well enough to keep going, I’ll keep going. And that’s it.

2. Engaging with dementia

This theme is all about dementia and how people with a diagnosis can try and positively deal with it. Many studies were found in which people with dementia display a fighting attitude, of facing it head on and fighting the stigma associated with it. Other people employ humour to face this difficult situation, whilst others also nourish hope. Now, hope is not meant in the way that you hope for a cure, but generally making the best out of the situation. One person said:

Life cannot be a bed of roses, but you can make it pretty good if you think in the right way.

3. Identity and growth

The last theme identified by the authors deals with personal identity beyond dementia and growing through the experience of having a diagnosis of dementia. In several studies, people with dementia engaged in this positive thinking by being thankful for a life well-lived. It is important for people to keep their own identity throughout the condition. Just because someone has received a diagnosis, it doesn’t mean that this person is changing his or her identity, at least for the time being. One person said:

You’ve lost your memory, but you haven’t lost your mind. And you’re still the same person.

This evidence highlights the potential for people to have positive experiences in spite of or even because of their dementia.

This evidence highlights the potential for people to have positive experiences in spite of or even because of their dementia.

Limitations

This systematic review captures a huge range of themes, and benefits from a clear discussion of different themes found in the literature on how to live positively with dementia.

One potential limitation might be the fact that it is a qualitative review. This is not only because of the re-analysis of themes by the authors of the review, but also because the included papers naturally don’t include all quotes from participants made in each study. So there is already a selective sample of quotes on display in the published studies, from which the authors collect their ‘data’. Moreover, I would say that the first key theme is not realy befitting the dementia diagnosis, as this motto can be mostly employed at any stage in life. However, this doesn’t mean it does not also apply to dementia.

Summary

Overall, it is great to see more research that focuses on the positive experiences of dementia. Obviously, we need to find a cure and tackle the large number of dementia cases diagnosed each year. Moreover there are hundreds of thousands of people already living with dementia, so it is equally vital to help these individuals maintain their well-being and live positively with dementia as much as possible.

Supporting people with dementia to live a positive life is an agenda in which we can all participate.

Supporting people with dementia to live a positive life is an agenda in which we can all participate.

Links

Primary paper

Wolverson EL, Clarke C, Moniz-Cook ED. (2015) Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health, DOI: 10.1080/13607863.2015.1052777 [PubMed abstract]

Other references

Belleville S, Chertkov H, Gauthier S. (2007). Working memory and control of attention in persons with Alzheimer’s disease and mild cognitive impairment. Neuropsychology, 21(4), 458–469. [PubMed abstract]

Giebel CM, Challis D, Montaldi D. (2014) A revised Interview for Deteriorations in daily Living Activities in Dementia reveals the relationship between social activities and well-being. Dementia, doi: http://dx.doi.org/10.1177/1471301214553614 [PubMed abstract]

Moniz-Cook E et al. (2008) Can training community mental health nurses to support family carers reduce behavioural problems in dementia? An exploratory pragmatic randomised controlled trial. International Journal of Geriatric Psychiatry, 23(2), 185–191. [PubMed abstract]

Risco E, Cabrera E, Jolley D, Stephan A, Karlsson S, Verbeek H, Saks K, Hupli M, Sourdet S, Zabalegui A. (2015) The association between physical dependency and the presence of neuropsychiatric symptoms, with the admission of people with dementia to a long-term care institution. International Journal of Nursing Studies, DOI: 10.1016/j.ijnurstu.2015.02.013 [PubMed abstract]

Sutcliffe CL, Giebel CM, Jolley D, Challis D. (2015) Experience of burden in carers of people with dementia on the margins of long-term care. Int. J. Geriatr. Psychiatry, DOI: 10.1002/gps.4295 [PubMed abstract]

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Clarissa Giebel

Clarissa is currently a Research Fellow at the University of Liverpool. Her research focuses on enabling people with dementia staying at home for as long as possible, whilst addressing potential health inequalities in accessing the right care. She is currently leading the first Covid-19 dementia study in the UK, exploring the effects of social service closures on the lives of people with dementia and unpaid carers. In her role as postdoctoral research associate at the NIHR ARC NWC, Clarissa is the Principal Investigator on a number of dementia and health inequalities projects. This includes a European Alzheimer's Society funded project into health inequalities in dementia care access in England and the Netherlands, also collecting Young Onset dementia specific data in Australia. Further funded international collaborations in dementia care include Colombia and Chile. She is also involved in the North West Coast Household Health Survey, looking at health inequalities in health service usage across the population. In addition, Clarissa is leading a care home collaboration, where she works jointly with colleagues from the Netherlands on implementing changes to a local Liverpool-based care home and developing a UK Dementia Village. Additional collaborations and projects include working with the Brain Charity evaluating social support groups for people with dementia, and with the Liverpool House of Memories to look into evaluating their intervention for family carers of people living with dementia and care professionals, and trying to roll the intervention out to other neighbourhoods.

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