The view of persons with and without dementia : important aspects of home care service

<p dir="ltr">Aim: The overall aim was to explore and describe what older persons, both with and without dementia value and consider important when receiving home care services. Additionally, the thesis aimed to enhance the knowledge of how persons with dementia perceive being treated with dignity and respect in home care services over time and to compare these perceptions with those persons without dementia receiving similar home care services.</p><p dir="ltr">Method: The included studies (n=3) were conducted within home care service facilities in Sweden. Participants included older persons, both with and without dementia in their medical record, who were receiving support and care from home care services. Studies I and II employed a qualitative design, with the data collected through semi-structured interviews and analysed using qualitative content analysis.</p><p dir="ltr">Study III, a longitudinal study with a quantitative design, was based on national survey data from the Swedish National Board of Health and Welfare. Each year, the survey What do Older Persons Think about Care for Older invites all older persons aged 65 years or older who received care from Swedish care for older to participate. Data from 2016–2018 were analysed using descriptive statistics and ordinal logistic regression models.</p><p dir="ltr">Findings: Study I explored the perspectives of 16 older persons without a dementia diagnosis on the values they considered important within home care services. Two main themes emerged: the need for support as autonomous persons and the need for support as relational beings. Participants reported that these values were only partially fulfilled by the services they received, and their well-being was negatively impacted when staff failed to uphold them. Key fundamental values identified included feeling safe, maintaining autonomy, exercising control and independence, and fostering relationships.</p><p dir="ltr">In study II one overarching theme that emerged from 14 persons with dementia emphasised the importance of receiving support as unique and capable human beings. They expressed that, despite their dementia diagnoses, it remained essential to be recognised as persons with abilities, even when they required support.</p><p dir="ltr">Study III found that persons with a dementia diagnosis had significantly lower odds ranging from 3% to 10% of expressing satisfaction with enquiries related to dignity and respect compared to those without dementia. From 2016 to 2018, satisfaction levels declined for both groups. Additionally, dissatisfaction was higher among females, persons with poor self-rated health, and those receiving more hours of home care services.</p><p dir="ltr">Conclusion: The findings from Studies I, II, and III highlight that older persons, with and without dementia, have care needs closely aligned with the psychosocial dimensions identified in Kitwood’s Model of psychosocial needs; identity, inclusion, attachment, comfort, and meaningful occupation. When these needs are supported, dignity, autonomy, and well-being are strengthened; when neglected, vulnerability and exclusion increase. Structural changes are needed to align policy ambitions with the realities of care, including support for psychosocial needs, investment in staff competence, and continuity in care relationships key factors in achieving truly person-centred care in the care for older.</p><h2>List of scientific papers</h2><p dir="ltr">I. Olsen, M., Udo, C., Dahlberg, L., & Boström, A. M. (2022). Older persons' views on important values in Swedish home care service: A semi-structured interview study. Journal of Multidisciplinary Healthcare, 15, 967-977. <a href="https://doi.org/10.2147/JMDH.S347886" rel="noreferrer" target="_blank">https://doi.org/10.2147/JMDH.S347886</a></p><p dir="ltr">II. Olsen, M., Udo, C., Boström, A. M., & Hammar, L. M. (2021). Important aspects of home care service: An interview study of persons with dementia. Dementia, 20(5), 1649–1663. <a href="https://doi.org/10.1177/1471301220964393" rel="noreferrer" target="_blank">https://doi.org/10.1177/1471301220964393</a></p><p dir="ltr">III. Hammar, L. M., Alam, M., Olsen, M., Swall, A., & Boström, A. M. (2021). Being treated with respect and dignity? Perceptions of home care service among persons with dementia. Journal of the American Medical Directors Association, 22(3), 656-662. <a href="https://doi.org/10.1016/j.jamda.2020.07.002" rel="noreferrer" target="_blank">https://doi.org/10.1016/j.jamda.2020.07.002</a></p>