Category: Dementia – Supporting Carers

Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made.

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This study is the first to explore informal dementia caregivers’ perceptions and outlook on written materials about all food-related processes: shopping, food preparation, and eating. The aim of the study was to develop and evaluate the content, format, and usefulness of two separate booklets (one newly developed and one existing) on food-related processes. Twenty dementia caregivers were provided with one of the two booklets, and a Think-Aloud method was used to gather information about their views on the booklets. The findings indicated that incorporating all three food processes in a new booklet could be beneficial for the participant. Shopping, purchasing food, driving, and dangers in the kitchen were addressed only in the developed booklet, and participants regarded them as important and useful areas to address. Therefore, this study has shown that tailored information may enhance caregivers’ confidence and support them in making decisions to help them adapt to food-related changes.

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A systematic review of international literature on key worker type support roles to identify essential components and ascertain how the role can be best utilised to assist community-dwelling people with dementia and their carers. This review of support roles is the first to our knowledge to include both quantitative and qualitative studies and all models of support. Conclusion: Studies that include a high quality evaluation of holistic, tailored models of support that identify which components of support produce the most valuable outcomes to assist people with dementia and their carers and families to continue to live meaningful lives are needed. There is also a need for a cost effectiveness evaluation of support worker roles.

Access the paper by clicking here What is the effectiveness of the support worker role for people with dementia and their carers? A systematic review.

When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers’ choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this. This study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.

Access the paper by clicking here Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. The objective of this study was to develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. The study’s results show a poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Concludes that vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.

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Assisting a person with dementia can lead to significant carer burden and possible negative outcomes for the person. Using the Delphi method, this study developed expert consensus guidelines for how family and non-professional carers should assist a person who is developing cognitive impairment, or has dementia or delirium. A total of 65 participants (43 in the professional panel and 22 in the carer advocate panel) completed all three survey rounds. Of the 656 survey items that were rated, a total of 389 items were endorsed by at least 80 % of each panel. The endorsed items formed the basis of a guidelines document that explains what family and non-professional carers need to know and do when assisting a person who is developing cognitive impairment, or has dementia or delirium. Concludes: The two groups of experts were able to reach substantial consensus on how to assist a person who is developing cognitive impairment, or has dementia or delirium.

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The National Alzheimer’s Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers’ knowledge and skills for managing patients’ often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One’s Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions. The Academy Library does not currently subscribe to the journal that this article appears in, however we can most likely request it from another library. Please contact the UHSM Academy Library for more detail or call 0161 291 5778.

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. 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. Concludes: 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.

Access the paper by clicking here An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

A diagnosis of dementia can have a significant effect, not only on the person diagnosed, but also on the person’s family. Drivers within national policy and strategy to raise awareness and promote education have improved the understanding of dementia across professional groups, as well as within the wider population. However, families living with dementia still struggle to find information and support. This paper explores the common issues faced by families, and focuses on a relationship approach to care. The role of the community nurse can be central to supporting people with dementia and their families to live well in their own communities. The paper uses a casestudy approach to discuss three scenarios commonly raised by family carers and people with dementia: (1) seeking help and support at point of seeking diagnosis, (2) knowing the ‘right time’ to seek help and advice, and (3) when symptomatic changes affect wellbeing and relationships.

Exploring the community nurse role in family-centred care for patients with dementia. (Brit J Com Nurs. 2016, 21(4), p198-202) (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)

Caring for a family member with dementia is stressful, and carers from all backgrounds often feel overwhelmed and under-supported. Professional and family carers’ perceptions of the challenges and satisfactions of caring are influenced by culturally derived expectations. However, experiences of caring often differ from stereotypical norms. Experiences of carer stress and beliefs about the nature and extent of support that can be expected from social networks and statutory services may differ between cultural groups in the UK, but sensitive advice, information, and emotional and practical support are universally required. Transcultural comparisons reveal similarities between carers’ needs and enable identification of values-based culturally congruent recommendations that nurses can use to promote black and Asian minority ethnic carers’ confidence and wellbeing.
This article, based on practice experience and a literature review, explores the effect of caring among different cultural groups and offers recommendations for culturally congruent interventions to support carers. It provides evidence-based guidance to enable nurses to meet their responsibilities for transcultural working, as laid out in the Care Act 2014. A scenario illustrates recommendations for practice.

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