This paper examines how the relatives of a person with dementia experience challenges in everyday life. A model of phases is developed on the basis of interviews with 14 relatives from eight families. Data were subjected to a thematic content analysis, which found that the progression of dementia – from the perspective of the family – had three phases.
These phases involved small changes in everyday life, adaptations to everyday life, and the loss of everyday life. The analysis further identified the following two archetypes of relatives that develop throughout the progression of dementia: the protective relative and the decisive relative.
The study found that the two types of relatives experience different challenges during the three phases. It is important for health professionals to be familiar with these changes, when they evaluate whether the relatives of a person with dementia require help.
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge.
By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions.
Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires – the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM).
Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764).
Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse’s emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.
The following report, put together by the British Psychological Society Dementia Advisory Group, presents a psychological perspective on the nature and experience of dementia
As well as outlining the roles and contributions of psychologists in the field of dementia care (particularly in supporting a move towards addressing dementia not only in terms of the underlying disease but also in considering the practical dimensions of social and cognitive disability associated with it), this report presents recommendations for action in the following areas:
Planning of care
Treatment and support
Dealing efectively and appropriately with families and carers
Training and research
These recommendations were produced in consultation with people experiencing dementia, their families, and their carers, in order to present a truly person-centred approach to dementia treatment and management in the UK.
Davies, N. et al. Palliative Medicine. Published online: October 25, 2016
Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.
Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.
Design: Qualitative study using in-depth interviews and analysed using thematic analysis.
Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.
Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.
Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
Meichsner, F. & Wilz, G. Aging & Mental Health. Published online: 28 Oct 2016
Objectives: Pre-death grief plays a significant role in dementia caregiving, and has adverse impacts on caregivers. It was the purpose of the present study to examine whether a cognitive-behavioral intervention including a grief intervention module could increase caregivers’ coping with pre-death grief and whether these effects could be maintained as of a six-month follow-up assessment.
Method: In a randomized-controlled trial examining the effectiveness of a cognitive-behavioral intervention, 273 caregivers were allocated to either an intervention or control group. Intervention group participants received 12 therapy sessions over six months; all participants completed a measure of pre-death grief. The analysis was conducted using latent change models. In the first model, study group was included as a predictor of change in pre-death grief; subsequent models also included care situation and sociodemographic variables.
Results: The burden due to pre-death grief was reduced for intervention but not control group participants at the time of the six-month follow-up assessment (Cohen’s d = −0.361). When controlling for changes in the care situation and sociodemographic variables, the treatment effect was also found in the assessment completed post intervention (Cohen’s d = −0.248).
Conclusion: Results indicate that a cognitive-behavioral intervention including grief-specific strategies can successfully foster caregivers’ coping with loss and reduce burden of pre-death grief.
Wawrziczny, E. et al. (2016) Dementia. 15 (5). pp. 1082-1099
Objective: The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse. Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads. The present study on 16 couples examines the experiences of each partner, as well as the kinds of interactions taking place within the dyad and how they have evolved since the disease began.
Design: An interpretative phenomenological analysis was conducted on dyadic semi-structured interviews.
Results: Seven axes emerged from the analyses, showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.
Giebel, C.M. et al. Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers. Dementia. Published online before print August 22, 2016
Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers.
The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette.
Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.