As the delivery of healthcare increasingly moves from institutional settings out into the community, new research is exploring the impact of in-home care services on the meaning and experience of home for older people living with dementia.

Christine While from the Australian Centre of Evidence Based Aged Care at La Trobe University said home was often deeply connected to identity and a person’s sense of self, but the expansion of community care risked turning the home into a “healthcare venue”.

Personal routines and preferences may become disrupted by carers and a person’s home reorganised to accommodate nursing equipment and hygienic workspaces.

Ms While, who was investigating these questions for her PhD thesis, said her early findings indicated that having choice and control was an important factor in a person accepting a service and adapting to the presence of home care workers.

“I am finding that the person with dementia who is actively involved in the planning of the service – who comes in and what they are coming in to do – seems to adapt quite well to having community services. Whereas others who are less involved or have a reduced awareness of why the service is needed struggle a lot. Some of the responses can be that they will resist care or completely refuse it,” she told Community Care Review.

Services that related to personal care or replaced the role of a family carer were also less well received by people with dementia compared with services that addressed home maintenance, transport or shopping.

On an emotional level, receiving a service or home modification could symbolise a person’s disability or challenge a person’s identity and traditional roles. “Care workers need to be preserving roles and routines and the way a person has managed their space within their home. If carers do need to alter these in any way, for example if district nursing wants a hygienic space for wound care management, they need to be negotiating that process more.”

Ms While, who presented at the HammondCare International Dementia Conference this month, has also identified the concept of the therapeutic home, where the familiarity of home can provide a sense of comfort and reassurance to a person with dementia and make the process of caring easier.

Participants in her study said they valued care workers who left stress at the front door, care managers who advocated for them, as well as continuity of care services. “Continuity of carers is seen as a way of developing a relationship and trust and promoting individualised care.”

Ms While said she hoped the study’s findings would inform community care workers’ understanding of home for the consumer and support person-centred care practices.

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