A longitudinal study of home care clients and their informal carers

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

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Living at the farm, innovative nursing home care for people with dementia – study protocol of an observational longitudinal study

BMC Geriatrics ◽

10.1186/s12877-015-0141-x ◽

2015 ◽

Vol 15 (1) ◽

Cited By ~ 20

Author(s):

B. de Boer ◽

J.P.H. Hamers ◽

H.C. Beerens ◽

S.M.G. Zwakhalen ◽

F.E.S. Tan ◽

...

Keyword(s):

Nursing Home ◽

Longitudinal Study ◽

Home Care ◽

Study Protocol ◽

Nursing Home Care ◽

People With Dementia

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A Groupware Tool to Facilitate Caregiving for Home-Dwelling Frail Older Persons in the Netherlands: Mixed-Methods Study (Preprint)

10.2196/preprints.10697 ◽

2018 ◽

Author(s):

Hanneke Breebaart ◽

Marjolein Broese van Groenou

Keyword(s):

The Netherlands ◽

Home Care ◽

Digital Communication ◽

Care Organization ◽

Care Network ◽

Formal Caregivers ◽

Care Recipients ◽

Frail Older Persons ◽

Informal Carers

BACKGROUND Collaboration among informal and formal caregivers in a mixed care network of home-dwelling elderly may benefit from using a groupware app for digital networked communication (DNC). OBJECTIVE This study aimed to describe and explain differences in the use and evaluation of a DNC app by members of the care network and to come up with a list of conditions that facilitate (or restrict) the implementation of a DNC app by a home care organization. METHODS A pilot study collected information on digital communication in 7 care networks of clients of a home care organization in the Netherlands. Semistructured interviews with 4 care recipients, 7 informal carers (of which 3 spoke on behalf of the care receiver as well on account of receivers’ suffering from dementia), 3 district nurses, 5 auxiliary nurses, and 3 managers were conducted 3 times in a period of 6 months. In addition, we observed relevant workshops initiated by the home care organization and studied log-in data created by the users of the DNC app. RESULTS The qualitative data and the monthly retrieved quantitative log-in data revealed 3 types of digital care networks: arranging the care network, discuss the care network, and staying connected network. Differences between network types were attributed to health impairment and digital illiteracy of the care recipients, motivation of informal caregivers, and commitment of formal caregivers. The easy availability of up-to-date information, the ability to promote a sense of safety for the carers, and short communication lines in case of complex care situations were positively evaluated. CONCLUSIONS It is concluded that digital communication is beneficial for organizing and discussing the care within a care network. More research is needed to study its impact on care burden of informal carers, on quality of care, and on quality of life of home-dwelling frail older adults.

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