Living at home with cognitive impairments : risks during daily living and support from home care service

The overall study’s aim was to increase knowledge of conditions for older, home-residing persons with cognitive impairments – with focus on risks during daily living and support from home care service. To disclose conditions for persons with cognitive impairments, four studies used different methodological approaches. Studies I and II applied a qualitative design; here focus was on daily living risks for persons with dementia. Study I explored experiences of 12 persons with dementia by interviewing them; data were processed using qualitative content analysis. Study II explored experiences of home care staff via 12 individual interviews and 2 focus group discussions (n=11); data were analysed using a constant comparative method. Studies III and IV applied a descriptive correlational cross-sectional design. Study III focused on describing the range of municipal-granted home care services and examined associations between services granted to persons with cognitive impairments and demographic characteristics (from records for 131 older persons). Study IV documented perceived job strain among home care staff members (n=69) and investigated if job strain correlated with personal and organisational factors.

Study I contributed knowledge about (i) how home-residing persons with dementia experienced risky situations as being unfamiliar and confusing and (ii) how they dealt with these situations and sought recognition and clarity to reduce risk. Study II showed how home care staff reasoned – regarding risks for persons with dementia – and how they struggled with dilemmas when (i) tracking risks, (ii) deciding when to act on a risk, and (iii) acting upon risks. Study III acquired knowledge about the range of home services granted to older persons and found that these persons receive a wide range of services including support for basic needs such as eating and drinking. This study also found that persons with cognitive impairments, and persons who live alone, were granted a higher number of home care services than other home care service applicants. Study IV generated knowledge regarding job strain, namely, (i) home care staff perceived high job strain, particularly dementia care specialists, (ii) employees who don’t have Swedish as their first language perceived higher job strain regarding understanding and interpreting work situations with older persons, and (iii) organisational climate is crucial because a more creative organisational climate is associated with lower job strain.

In conclusion, these findings provided better understanding of how persons with dementia experienced risk-filled situations and showed that risks should be accounted for because they can affect how individuals engage in activities of daily living. Home care staff members are challenged as they face dilemmas when managing situations fraught with risk for persons with dementia, and they often work alone. Staff members encountered persons who were granted a wide range of services and staff perceived high job strain. Therefore, it’s important to ensure that home care staff members have appropriate support and work under appropriate organisational conditions so they can take safety into account while supporting persons with cognitive impairment to engage in daily life – despite presence of risks.

List of scientific papers

I. Sandberg, L., Rosenberg, L., Sandman, P.-O., & Borell, L. (2017). Risks in situations that are experienced as unfamiliar and confusing – the perspective of persons with dementia. Dementia. 16 (4), 471-485.
https://doi.org/10.1177/1471301215603836

II. Sandberg, L., Borell, L., & Rosenberg, L. Risks as dilemmas for home care staff who care for persons with dementia. [Manuscript]

III. Sandberg, L., Nilsson, I., Rosenberg, L., Borell, L., & Boström, A.-M. (2018). Home care services for older clients with and without cognitive impairment in Sweden. Health & Social Care in the Community. 1-12.
https://doi.org/10.1111/hsc.12631

IV. Sandberg, L., Borell, L., Edvardsson, D., Rosenberg, L., & Boström, A.-M. (2018). Job strain: a cross-sectional survey of dementia care specialists and other staff in Swedish home care services. Journal of Multidisciplinary Healthcare. 11, 255-266.
https://doi.org/10.2147/JMDH.S15546