Right at home: living with dementia and multi-morbidities

Abstract Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multi-morbidities presents critical challenges for home care worldwide. Health-care systems struggle to provide adequate home-care services, delivering limited care restricted to a single-condition focus. This study explored the experiences and expectations of home care from the multiple perspectives of people living with dementia and multi-morbidities and home-care workers providing support. Findings draw from qualititative semi-structured interviews with people with dementia (N = 2), their partners (N = 2), other partners or family carers (N = 6) and home-care workers (N = 26). Three themes are identified: (a) the preference for and value of home; (b) inadequate home-care provision and enhanced care burden; and (c) limited training and education. Despite continued calls for home-care investment, the focus on reduction in costs hides key questions and further dialogue is required exploring how people with dementia can be supported to live independently and flourish at home. This study considers these complex experiences and care requirements through the prism of disability and human rights frameworks. This paper concludes with consideration of more recent human social rights debate. We discuss critically what this may mean for people living with dementia and consider the implications for co-requisite policy development to optimise available home-care support.

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Care at Home: Family Caregivers and Home Care Workers

Family Caregiving across the Lifespan Family caregiving across the lifespan ◽

10.4135/9781452243238.n11 ◽

2012 ◽

pp. 287-311 ◽

Cited By ~ 6

Author(s):

Lucy Rose Fischer ◽

Nancy N. Eustis

Keyword(s):

Home Care ◽

Family Caregivers ◽

Care Workers ◽

Care At Home ◽

Home Care Workers ◽

At Home

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‘It’s what you do that makes a difference’ An interpretative phenomenological analysis of health care professionals and home care workers experiences of nutritional care for people living with dementia at home

BMC Geriatrics ◽

10.1186/s12877-019-1270-4 ◽

2019 ◽

Vol 19 (1) ◽

Author(s):

Louise Mole ◽

Bridie Kent ◽

Mary Hickson ◽

Rebecca Abbott

Keyword(s):

Health Care ◽

Home Care ◽

Health Care Professionals ◽

Interpretative Phenomenological Analysis ◽

Phenomenological Analysis ◽

Care Practice ◽

Nutritional Care ◽

Care Workers ◽

Home Care Workers ◽

At Home

Abstract Background People living with dementia at home are a group who are at increased risk of malnutrition. Health care professionals and home care workers, are ideally placed to support nutritional care in this vulnerable group. Yet, few, if any studies, have captured the experiences of these workers in respect of treating and managing nutritional issues. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of health care professionals and home care workers. Methods Semi-structured interviews were conducted between December 2017 and March 2018, and supplemented with the use of a vignette outlining a scenario of a husband caring for his wife with dementia. Health care professionals and home care workers were purposively recruited from local care providers in the south west of England, who had experience of working with people with dementia. An Interpretative Phenomenological Analysis (IPA) approach was used throughout. Results Seven participants took part including two home care workers, a general practitioner, dietitian, occupational therapist, nurse and social worker. The time in their professions ranged from 3 to 15 years (mean = 8.9 years). Following analysis, four superordinate themes were identified: ‘responsibility to care’, ‘practice restrained by policy’, ‘in it together’, and ‘improving nutritional care’. This group of health care professionals and home care workers recognised the importance of improving nutritional care for people living with dementia at home, and felt a responsibility for it. However they felt that they were restricted by time and/or knowledge. The importance of supporting the family carer and working collaboratively was highlighted. Conclusions Health care professionals and home care workers require further training to better equip them to provide nutritional care for people living with dementia at home. Models of care may also need to be adapted to enable a more flexible and tailored approach to incorporate nutritional care. Future work in this area should focus on how health care professionals and home care workers can be better equipped to screen for malnutrition, and support changes to nutritional intake to mitigate malnutrition risk.

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Using a Reflective Diary Method to Investigate the Experiences of Paid Home Care Workers Caring for People With Dementia

Home Health Care Management & Practice ◽

10.1177/1084822319876571 ◽

2019 ◽

Vol 32 (1) ◽

pp. 10-21 ◽

Cited By ~ 1

Author(s):

Cheryl Travers ◽

Justine Schneider ◽

Lucy Perry-Young ◽

Samantha Wilkinson ◽

Kezia Scales ◽

...

Keyword(s):

Home Care ◽

Occupational Group ◽

Care Organization ◽

Diary Method ◽

People With Dementia ◽

Hourly Rate ◽

Care Workers ◽

Care Practices ◽

Home Care Workers ◽

And Training

This article reports on the use of an innovative reflective diary method with paid home care workers caring for people with dementia. It examines the key features of the diary design, recruitment and training of participants, diarists’ approaches and responses to diary-keeping, and evaluates the use of diaries in this context. Following training, 11 volunteers (all female) employed by a U.K.-based home care organization kept diaries of their experiences of caring for those with dementia. Using specially designed diaries, they wrote about their visits to clients for a period of approximately 4 months and were remunerated for up to 16 extra hours at their usual hourly rate of pay. Overall, home care workers engaged well with the process, keeping regular, lengthy, timely, and reflective diary entries. Diary-keeping provided a means for these workers to express their emotions about their work, while enhancing their self-insight and care practices. We demonstrate the feasibility of diaries for research with this occupational group and conclude that the written reflexivity employed in diaries can document, enrich, and improve the work of these caregivers.

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Abuse is in the eyes of the beholder: using multiple perspectives to evaluate elder mistreatment under round-the-clock foreign home carers in Israel

Ageing and Society ◽

10.1017/s0144686x1000108x ◽

2010 ◽

Vol 31 (3) ◽

pp. 499-520 ◽

Cited By ~ 12

Author(s):

LIAT AYALON

Keyword(s):

Older Adults ◽

Home Care ◽

Elder Abuse ◽

Family Members ◽

Multiple Perspectives ◽

Elder Abuse And Neglect ◽

Care Recipients ◽

Care Workers ◽

Abuse And Neglect ◽

Home Care Workers

ABSTRACTThe overall goal of the study reported in this paper was to examine differences in the perceived occurrence of abuse and neglect as between older care recipients, their family carers, and foreign home-care workers in Israel. Overall, 148 matched family members and foreign home-care workers and 75 care recipients completed a survey of abuse and neglect. Significant discrepancies in their reports of neglect were found, with the foreign home-care workers more likely to identify neglect (66%) than the older adults (27.7%) or their family members (29.5%). Although the rates of reported abuse ranged between 16.4 and 20.7 per cent and the differences were not statistically significant, the different parties assigned the responsibility for the abuse to different perpetrators. The independent variables that significantly associated with abuse and neglect also varied by the three groups of participants. The findings suggest that even with round-the-clock home care, the basic needs of many older adults are not met, and that many experience substantial abuse. The study emphasises the subjective nature of abuse and neglect, and suggests that more education about what constitutes elder abuse and neglect may lead to more accurate and consistent reports across reporting sources. Incorporating data from the various stakeholders may enhance the early identification of elder abuse and neglect.

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Home Care Workers’ Experiences of Client Death and Disenfranchised Grief

Qualitative Health Research ◽

10.1177/1049732318800461 ◽

2018 ◽

Vol 29 (3) ◽

pp. 382-392 ◽

Cited By ~ 5

Author(s):

Emma K. Tsui ◽

Emily Franzosa ◽

Kristen A. Cribbs ◽

Sherry Baron

Keyword(s):

Health Care ◽

New York ◽

Home Care ◽

Health Care Workers ◽

Patient Death ◽

Disenfranchised Grief ◽

Care Workers ◽

Close Relationship ◽

Care Systems ◽

Home Care Workers

While many types of health care workers experience patient death, home care workers do so under vastly different social and economic circumstances. When a client dies, home care workers often lose both a close relationship and a job. Though research suggests that health care workers’ grief may frequently be disenfranchised, there is no in-depth study of the mechanisms that disenfranchise home care workers’ grief specifically. To address this gap, our study used focus groups and peer interviews between home care workers in New York City. We describe four interrelated grief strategies they employ to navigate social and employer-based “grieving rules.” Our findings suggest that home care workers’ grief is disenfranchised via employer and societal underestimations of their relationships with clients and their losses when clients die, particularly job loss. Building on our findings, we suggest alterations to agency practices and home care systems to improve support for workers.

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Working with colleagues and other professionals when caring for people with dementia at the end of life: home care workers’ experiences

International Journal of Care and Caring ◽

10.1332/239788219x15651814499954 ◽

2019 ◽

Vol 3 (4) ◽

pp. 567-583

Author(s):

Jill Manthorpe ◽

Tushna Vandrevala ◽

Ruth Abrams ◽

Kritika Samsi

Keyword(s):

Home Care ◽

Home Care Services ◽

Care Staff ◽

Structured Interviews ◽

Care Services ◽

People With Dementia ◽

Care Workers ◽

Informal Practices ◽

Home Care Workers ◽

Care Agency

Caring for people with dementia often necessitates inter-professional and inter-agency working but there is limited evidence of how home care staff work as a team and with professionals from different agencies. Through analysis of semi-structured interviews, we explored the experiences of home care workers (n = 30) and managers of home care services (n = 13) in England (2016‐17). Both groups sought to collaboratively establish formal and informal practices of teamwork. Beyond the home care agency, experiences of interacting with the wider health and care workforce differed. More explicit encouragement of support for home care workers is needed by other professionals and their employers.

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What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers

BMC Geriatrics ◽

10.1186/s12877-021-02727-4 ◽

2022 ◽

Vol 22 (1) ◽

Author(s):

Anita M. Y. Goh ◽

Meg Polacsek ◽

Sue Malta ◽

Colleen Doyle ◽

Brendan Hallam ◽

...

Keyword(s):

Home Care ◽

Care Service ◽

Home Care Services ◽

Dementia Care ◽

Trial Registration ◽

Care Providers ◽

Family Carers ◽

People With Dementia ◽

Care Workers ◽

Home Care Workers

Abstract Background Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Methods We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach. Results Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. Conclusions It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. Trial registration ACTRN 12619000251123.

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