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How family carers view hospital discharge planning for the older person with a dementia
- Authors:
- BAUER Michael, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(3), August 2011, pp.317-323.
- Publisher:
- Sage
In the context of research showing that discharge planning processes vary between hospitals and that some patients with dementia are discharged without adequate aftercare plans, this research looked at carers' experiences of the hospital discharge planning process for a family member with a dementia. A study funded by Alzheimer's Australia Research explored the question of whether caregivers who take responsibility for caring for a family member with dementia receive, as part of the hospital discharge planning process, the physical and psychosocial support they need to continue their caring role. This paper reports on one aspect of the study: family carers' perceptions of hospital discharge planning and preparation. 25 principal family carers of people with dementia were recruited in Victoria, Australia. The qualitative research involved semi-structured interviews about their experience of the preparation for and execution of hospital discharge, within 6 weeks of the patient's discharge from hospital. The article presents results of the analysis of the interviews, with examples. Analysis of the data indicated that the needs of family carers were not always addressed in the hospital discharge process and that discharge planning and execution needs improvement. Common concerns relating to discharge planning and preparation for older people with dementia and their family included: perceptions that discharge planning was ad hoc with no plan, lack of provision of information that family carers identified as important to their role, poor communication and information sharing between healthcare professionals and the family, and care provided to patients not meeting family members' expectations.
Dementia in a social conext
- Author:
- GILMOUR Helen
- Journal article citation:
- Journal of Dementia Care, 10(1), January 2002, p.10.
- Publisher:
- Hawker
Describes a research project focused on a rural community.
Carers
- Author:
- BECKER Saul
- Journal article citation:
- Research Matters, 1999, pp.20-22.
- Publisher:
- Community Care
Discusses how American research supports UK findings that the contribution of carers often goes unrecognised despite its importance to the care economy. Looks at how this has increased pressure in the US for a more adequate response to carers' needs.
How to give carers a break
- Authors:
- MORIARTY Jo, LEVIN Enid
- Journal article citation:
- Journal of Dementia Care, 3(3), May 1995, pp.20-21.
- Publisher:
- Hawker
Respite care services must adapt to the changing needs of users and carers. Looks at the results of research undertaken by the authors to find out the extent and types of respite care available and the purposes and benefits of respite care.
Down syndrome and alzheimer’s disease: issues and implications for social work practice
- Authors:
- FREDERICKSEN Jessica, FABBRE Vanessa D.
- Journal article citation:
- Journal of Gerontological Social Work, 61(1), 2018, pp.4-10.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Owing to recent medical advancements, people with Down Syndrome (DS) are now able to live considerably longer lives and thus experience a variety of complex issues as they age. Alzheimer’s Disease (AD) frequently occurs in older adults who have DS, but few practice guidelines exist to inform social work practice with older adults who have this dual diagnosis. This commentary will highlight the connection between these two conditions within a neurobiological framework and discuss implications for practice based on the available literature on this intersection of ability status, cognitive status, and age. (Publisher abstract)
Support groups for Alzheimer’s caregivers: creating our own space in uncertain times
- Authors:
- SIMPSON Gaynell M., et al
- Journal article citation:
- Social Work in Mental Health, 16(3), 2018, pp.303-320.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Older men are often excluded from family caregiving research despite the steady increase in the number of husbands assuming primary caregiving roles. The authors explored perceptions of older, male caregivers’ experiences with caring for a wife with Alzheimer’s Disease (AD) and examined what aspects of the support group were beneficial. The qualitative research methods used invited six caregivers ranging in age from 74 to 85 years to narratively construct their perspectives on caring for their wives with Alzheimer’s Disease and benefits of participation in an all-male support group. Thematic analyses revealed caregivers faced several transitions. “Losses related to their personal relationships with their wife, family, and self,” captured as loss of golden years. The second area, benefits and improvements of support groups, were captured in the following theme: “creating our own space,” which included two sub-themes: “releasing our frustration” and “developing coping strategies.” There was also “Gendered experience of caregiving.” This study revealed that male caregivers benefited from the support and company of other men in similar caregiving situations. Results from this study have implications for health care professionals for the development of psychosocial educational groups aimed at providing support to male caregivers. (Edited publisher abstract)
Preparedness for death: how caregivers of elders with dementia define and perceive its value
- Authors:
- HOVLAND-SCAFE Cynthia A., KRAMER Betty J.
- Journal article citation:
- Gerontologist, 57(6), 2017, pp.1093-1102.
- Publisher:
- Oxford University Press
Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value. Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyse the data. Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your “house in order”; (iv) saying “what you need to say”; and (v) giving “permission” to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared. Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts (Publisher abstract)
Illness representations in caregivers of people with dementia
- Authors:
- QUINN Catherine, JONES Ian Rees, CLARE Linda
- Journal article citation:
- Aging and Mental Health, 21(5), 2017, pp.553-561.
- Publisher:
- Taylor and Francis
Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial. (Publisher abstract)
Negotiating access to a diagnosis of dementia: implications for policies in health and social care
- Authors:
- KOEHN Sharon, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1436-1456.
- Publisher:
- Sage
The ‘Pathways to Diagnosis’ study captured the experience of the prediagnosis period of Alzheimer’s disease and related dementias through indepth interviews with 29 persons with dementia and 34 of their family caregivers across four sites: anglophones in Calgary, francophones in Ottawa, Chinese-Canadians in Greater Vancouver and Indo-Canadians in Toronto. In this cross-site analysis, the authors use the ‘Candidacy’ framework to comprehensively explore the challenges to securing a diagnosis of dementia in Canada and to develop relevant health and social policy. Candidacy views eligibility for appropriate medical care as a process of joint negotiation between individuals and health services, which can be understood relative to seven dimensions: identification of need, navigation, appearances at services, adjudication by providers, acceptance of/resistance to offers, permeability of services and local conditions. Interviewees experienced challenges relative to each of the seven dimensions and these varied in form and emphasis across the four ethno-linguistic groups. (Edited publisher abstract)
Living through end-stage dementia: the experiences and expressed needs of family carers
- Authors:
- SHANLEY Chris, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(3), August 2011, pp.325-340.
- Publisher:
- Sage
The findings reported in this article are part of the study Dying with dementia: an exploratory study of family caregiver perspectives on best quality care and support practices at the end of life, carried out in Australia. The article focuses on the experiences and needs of family carers of people with end-stage dementia. 15 family members who had been carers of a relative with dementia during the late and terminal stages of the disease were recruited through Alzheimer's Australia NSW. Information was collected using semi-structured in-depth interviews which were recorded and transcribed. The main themes emerging from the accounts of participants' experiences were: getting support, having to trust others with care, managing the loneliness of being a carer, witnessing a loved one fade away, anticipating and experiencing death, and re-establishing life after the funeral. The article discusses the findings with examples from the interviews. Carers expressed a range of instrumental needs (including physical help, respite and information) and psychosocial needs (including empathy and understanding, maintaining a relationship with their loved one, maintaining their own health and well-being, and support from professionals). The authors conclude that the study provided personal perspectives of the caring experience, highlighting carers' need for understanding and connection from family and friends as well as healthcare staff, the support carers can provide to each other through support groups and friendships, and the importance of healthcare staff acknowledging and respecting the capacity of carers.