Emma Harding

A meta-review of stress, coping and interventions in dementia and dementia caregiving

BackgroundThere has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014.MethodA meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches.ResultsThe meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of “Psychological Well-Being v. Psychological Morbidity” and two narrower dimensions of “Knowledge and Coping” and of “Institutionalisation Delay”.ConclusionsThis meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for caregivers were associated with wishful thinking, denial and avoidance coping strategies. Psychosocial and Psychoeducational interventions were beneficial for caregivers and for people with dementia. Support groups, Multicomponent interventions and Joint Engagements by both caregivers and people with dementia were generally found to be beneficial. It was notable that virtually all reviews addressed very general coping strategies for stress broadly considered, rather than in terms of specific remedies for specific sources of stress. Investigation of specific stressors and remedies would seem to be a useful area for future research.

Use of the physical environment to support everyday activities for people with dementia: A systematic review

Difficulty with everyday activities is a key symptom and defining feature of dementia, relating to subjective reports of well-being and overall quality of life. One way to support individuals in their daily activities is by modifying the physical environment to make it easier to interact with during activity performance. This systematic review explores the range of studies available using physical environmental strategies to support performance in everyday activities for people with dementia. Seventy-two relevant studies were identified by the search. Physical environmental strategies included changes to the global environment and to architectural features, use of moveable environmental aids and tailored individual approaches. Strategies supported general everyday activity functioning (N = 19), as well as specific activities, particularly mealtimes (N = 15) and orientation in space (N = 16); however, few studies were found that focused on aspects of personal care such as dressing (N = 1) and showering or the preferred hobbies of individuals (N = 0). Overall, there appeared to be a lack of research within private home environments, and of studies which specify the dementia syndrome or the whole neuropsychological profile of people with dementia. More work is needed to extend theoretical understandings of how people with dementia interact with their environments so that these spaces can be designed to further support activities of daily living performance. Future work in this field could also incorporate the perspectives and preferences of those living with dementia.

Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science

Created Out of Mind is an interdisciplinary project, comprised of individuals from arts, social sciences, music, biomedical sciences, humanities and operational disciplines. Collaboratively we are working to shape perceptions of dementias through the arts and sciences, from a position within the Wellcome Collection. The Collection is a public building, above objects and archives, with a porous relationship between research, museum artefacts, and the public. This pre-planning framework will act as an introduction to Created Out of Mind. The framework explains the rationale and aims of the project, outlines our focus for the project, and explores a number of challenges we have encountered by virtue of working in this way.

‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy

Objectives To explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families. Design A qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed. Setting Participants’ homes. Participants 20 individuals in the mild to moderate stages of PCA and 20 family carers. Findings Three major themes were identified: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities. Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. The experience was framed by background and contextual factors and understood within an ever-changing temporal context. Conclusion The stress process in PCA is characterised by uncertainty and unpredictability from diagnosis through to ongoing management. The provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being. Future research exploring (1) stress and coping in the later stages of PCA and (2) the nature and impact of visual impairment(s) in typical Alzheimer’s disease would be worthwhile.

IS THIS MY HOUSE? UNDERSTANDING THE IMPACT OF DEMENTIA-RELATED VISUAL IMPAIRMENT WITHIN THE HOME ENVIRONMENT

income and number of assets). We also estimate a combined PAF, and adjusted combined PAF to account for the non-independence of the risk factors in order to provide more conservative estimates of the proportion of incidence disability cases attributable to depression and dementia. Results:From a sample without severe disability at baseline, the prevalence of depression at baseline was 24.2% (95% CI: 22.2-26.3), and for dementia was 5.4 % (95% CI: 4.4-6.6). Rate or incidence of severe disability among people with dementia at baseline was 167.27 per 1000 person years (py) (CI 95%: 118.90-235.30), and among people with depression at baseline was 71.26 py (CI 56.3890.07). Non-adjusted contribution of dementia and depression to disability was 4.2% (95% CI: 3.1-5.2) and 11.4% (95% CI: 6.9-15.7), respectively. The combined PAF for both mental conditions was 15.1% (95% CI: 9.8-20.1), and the adjusted combined PAF was 9.9% (95% CI: 6.5-13.1). Conclusions: Conservative estimates showed that depression and dementia together account for nearly 10% of severe disability in Mexican elders. It is necessary to recognize mental illnesses is an important component to pay attention in the public health approach of older adults.

STRESS PATHWAYS FOR PEOPLE WITH POSTERIOR CORTICAL ATROPHY AND THEIR CARERS

examined the knowledge and attitude about dementia among a Bangladeshi community in England. In this context, it is vital that future study highlights the importance of raising dementia awareness and provides more information to Bangladeshi community members about dementia, dementia caregiving as well as religiously sensitive healthcare services. Female 0.95 (0.64-1.42) 0.808 1.05 (0.62-1.77) 0.865 Social Support 0.88 (0.86-0.91) <0.001 0.91 (0.87-0.95) <0.001 Screened Positive for dementia 0.92 (0.44-1.90) 0.818 1.11 (0.47-2.60) 0.814