Family caregivers’ conceptualisation of quality end-of-life care for people with dementia

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.

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Dementia caregivers’ coping with pre-death grief: effects of a CBT-based intervention

Meichsner, F. & Wilz, G. Aging & Mental Health. Published online: 28 Oct 2016

B0009841 Counselling for social anxiety disorder, illustration
Image source: Jasmine Parker – Wellcome Images // CC BY-NC-ND 4.0

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.

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Couples’ experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics

Wawrziczny, E. et al. (2016) Dementia. 15 (5). pp. 1082-1099

pair-378562_960_720Objective: 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.

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Costs of formal and informal care at home for people with dementia

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

Abstract:

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.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

Saini, G. et al. BMC Palliative Care. Published online: 7 July 2016

Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.

Methods: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.

Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.

Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

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Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review

Feast, A. et al. The British Journal of Psychiatry. May 2016, 208 (5) 429-434

Background: Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative’s behaviours contribute to the success of support programmes.

Aims: To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered.

Method: A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012.

Results: We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging.

Conclusions: Family carers’ perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers.

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Day care centres for people with dementia

The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature.
Aging & Mental Health Volume 20, Issue 5, 2016

Objectives: Day care centres (DCC) for people with dementia (PWD) have received increased attention recently, due to a shift in policy from the use of residential care towards home-based services. The aim of this study is to provide an extended understanding of the influence of DCCs on family caregivers (FCs).

Method: An integrative review including 19 studies was used: qualitative (n = 2), quantitative non-randomised (n = 8), quantitative descriptive studies (n = 7), and with mixed-method design (n = 2). The quality of the studies was evaluated by the mixed-methods appraisal tool (MMAT).

Results: FC experienced the DCC both as a respite service, and to some extent as a support service, improving their competence in caring for the PWD. The quality of the DCC influenced its use, and the FC’s motivation to care for the PWD. FC’s gender, role, individual needs, PWD behavioural problems and need for assistance played an important role.

Conclusion: As a respite and support service, DCCs have the potential to give FCs a feeling of safety and relief, reduce the caregiver’s burden, and increase their motivation towards their role as caregivers. These outcomes depend on the quality of treatment, and how the service meets the FC’s needs for flexibility, support, information, and responsibility sharing.

Dementia patients are people, not a medical condition. Communication and co-operation are key to their care

By Sophia Stanworth for the Guardian

When I first came across John’s Campaign I remember thinking: “Why is this needed?” But the more I read, the more I realised that my own experience, 10 years earlier, had many similarities. My father Pag Monro – a doctor, like Dr John Gerrard, after whom the campaign is named – had vascular dementia when he was admitted to Hinchingbrooke Hospital in Huntingdon, Cambridgeshire after a fall which broke his collar bone. He was there for three months.

Had I known my father would spend so long in hospital, I would have tried to keep him at home, but hindsight is a wonderful thing. His care in hospital was always well-intentioned but not always suitable, and unfortunately he succumbed to various infections. However, I was given open access to the ward – initially to ensure that he took his medication – and I soon became a regular visitor, with some nurses even asking when my next shift was.

It is essential, I believe, for relatives and carers to have such access at all times. They should be regarded as a valuable resource who can assist nursing staff in day-to-day care. Communication and co-operation are key. Just as the patient with dementia should be seen as a person, not a medical condition, staff looking after them must have as much information as possible to ensure their care is the best it can be.

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