Dementia

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.

Community-based arts programs for persons with dementia and their care partners hold tremendous potential for increasing cognitive, social, and creative engagement and improving quality of life for these dyads. This is a qualitative, grounded theory analysis of here:now , a joint arts engagement program for persons with dementia and their care partners that involves gallery tours and art classes. Twenty-one care partners and 13 persons with dementia completed in-depth, semi-structured telephone interviews approximately two weeks following participation in the program. The program was well received by both persons with dementia and care partners as evidenced by high levels of engagement, mindfulness, social connection, and positive interactions. Factors identified as important to the experience included the museum space itself, the facilitation process, and socialization with other participants. Results form the basis for a conceptual model for assessing outcomes of arts programming and highlight the unique position of museums to support persons with dementia and their care partners in the community.

Elder-clowns are a recent innovation in arts-based approaches to person-centred dementia care. They use improvisation, humour, and empathy, as well as song, dance, and music. We examined elder-clown practice and techniques through a 12-week programme with 23 long-term care residents with moderate to severe dementia in Ontario, Canada. Analysis was based on qualitative interviews and ethnographic observations of video-recorded clown-resident interactions and practice reflections. Findings highlight the reciprocal nature of clown-resident engagement and the capacity of residents to initiate as well as respond to verbal and embodied engagement. Termed relational presence, this was achieved and experienced through affective relationality, reciprocal playfulness, and coconstructed imagination. These results highlight the often overlooked capacity of individuals living with dementia to be deliberately funny, playful, and imaginative. Relational presence offers an important perspective with which to rethink care relationships between individuals living with dementia and long-term care staff.

Previous literature reveals a high prevalence of grief in dementia caregivers before physical death of the person with dementia that is associated with stress, burden, and depression. To date, theoretical models and therapeutic interventions with grief in caregivers have not adequately considered the grief process, but instead have focused on grief as a symptom that manifests within the process of caregiving. The Dementia Grief Model explicates the unique process of pre-death grief in dementia caregivers. In this paper we introduce the Dementia Grief Model, describe the unique characteristics of dementia grief, and present the psychological states associated with the process of dementia grief. The model explicates an iterative grief process involving three states—separation, liminality, and re-emergence—each with a dynamic mechanism that facilitates or hinders movement through the dementia grief process. Finally, we offer potential applied research questions informed by the model.

The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs’ perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public.

Investment in improving community-based dementia care is underway in the United Kingdom, but we do not know how well it meets the needs of people with dementia and those who care for them. The aim of this study was to explore the service use and reported unmet needs of people with dementia in two samples recruited a decade apart. We interviewed 122 carers from Central Scotland and London in 2000–2001 and 84 carers from South-East England in 2010–2011 using the same interview schedule. The two samples of carers had similar demographics. The later groups were more likely to be spouses, slightly older, not working, ethnically diverse, have better perceived health and better access to a car. The people with dementia in each sample had similar characteristics and levels of disability. Carers in the later sample reported more met need for activities of daily living, although up to a third were still not getting sufficient help with some activities. Nearly half of both samples reported verbal aggression and nearly a fifth physical aggression, yet most have not received advice on how to manage this. There is a more evident role of the practice nurse (p = 0.01) and less evident use of community nurses (p = 0.0005), psychiatric nurses (p = 0.006) and health visitors (p = 0.0003) in the more recent sample.

As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.

The aim of this study was to identify factors associated with family resilience in families caring for a parent with dementia. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised 47 families in which adult children were caring for a parent with dementia. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product–moment correlation coefficients and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. It was found that acceptance, optimism, positive communication patterns, family connectedness, spirituality, social support, economic resources and the effective management of symptoms helped these families adapt to the burdens of dementia care. In addition to expanding the literature regarding family resilience, the findings could be used to develop interventions tailored to the needs of these families caring for a parent with dementia to create a family environment that enhances adjustment and adaptation.