Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease.
BACKGROUND
Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated.


OBJECTIVE
To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease.


METHODS
A qualitative approach with focus group interviews.


METHODS
Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis.


RESULTS
The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'.


CONCLUSIONS
Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
Connie
C
Lethin
The Pufendorf Institute of Advanced Studies, Lund, Sweden.
Ingalill Rahm
IR
Hallberg
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
Staffan
S
Karlsson
School of Health and Society, Kristianstad University, Kristianstad, Sweden.
Ann-Christin
AC
Janlöv
D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003704:Dementia / Q000451:nursing*; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged
Alzheimer's disease; dementia; experiences; family caregivers; focus groups; formal care; nursing; qualitative research; trajectory; transition theory