Dignity as a guiding principle for family care partners in the care of an old relative with dementia

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T1 - Dignity as a guiding principle for family care partners in the care of an old relative with dementia

AU - Söderberg, Maria

AU - Ståhl, Agneta

AU - Melin Emilsson, Ulla

PY - 2019/5/20

Y1 - 2019/5/20

N2 - Aim: There is a growing number of older people (65+) with dementia, and many family care partners are involved in making help-seeking choices. The aim of this study was to reveal how family care partners with an old relative with dementia proceed in the name of dignity in their desire to secure the best care possible while still maintaining their own dignity. Methods: Data were collected in 2009–2010 in open semi-structured interviews and follow-up contacts with seven family care partners with an old relative with dementia on 14 occasions. From this collected data and for this study, a design based on patterns labelled archetypes was chosen to permit an in-depth data analysis. Results: In the analysis, three archetypes emerged, emanating from three specific family care partners. A prominent feature in the findings was that the dignity of an old relative with dementia was hard to separate from the dignity as a family care partner, which gave rise to their need to express accounts in terms of excuses and justifications. Conclusion: This study provides an important insight into the connection between different elements of dignity and it contributes to explain the complexity behind family care partners’ decisions in the care of an old relative with dementia. This multifaceted meaning of dignity needs more attention for a better understanding and thereby implementation in practice and in the follow-up of policy for older people.

AB - Aim: There is a growing number of older people (65+) with dementia, and many family care partners are involved in making help-seeking choices. The aim of this study was to reveal how family care partners with an old relative with dementia proceed in the name of dignity in their desire to secure the best care possible while still maintaining their own dignity. Methods: Data were collected in 2009–2010 in open semi-structured interviews and follow-up contacts with seven family care partners with an old relative with dementia on 14 occasions. From this collected data and for this study, a design based on patterns labelled archetypes was chosen to permit an in-depth data analysis. Results: In the analysis, three archetypes emerged, emanating from three specific family care partners. A prominent feature in the findings was that the dignity of an old relative with dementia was hard to separate from the dignity as a family care partner, which gave rise to their need to express accounts in terms of excuses and justifications. Conclusion: This study provides an important insight into the connection between different elements of dignity and it contributes to explain the complexity behind family care partners’ decisions in the care of an old relative with dementia. This multifaceted meaning of dignity needs more attention for a better understanding and thereby implementation in practice and in the follow-up of policy for older people.

KW - dementia

KW - elder care

KW - family care

U2 - 10.1111/scs.12708

DO - 10.1111/scs.12708

M3 - Article

JO - Scandinavian Journal of Caring Sciences

JF - Scandinavian Journal of Caring Sciences

SN - 1471-6712

ER -