Informal caregivers view of collaboration, communication and information to a person with dementia in sweden

• Background: People with dementia are often cared for by informal caregivers combined with formal care. Informal caregiver’s experiences of formal care through the trajectory of dementia are important for understanding how formal care is working and how the care can be developed.Objectives: To explore informal caregiver’s view of collabora - tion, communication and information with formal care when providing care to a person with dementia in the trajectory from diagnosis to end of life in a Swedish context.Method: Four focus groups interviews were provided with informal caregivers and persons with dementia. An interview guide was used, for discussing how communication with formal care works, the characteristics when it is working well and less well, how informal caregivers wish interaction with formal care should work and suggestions for improvement. The transcribed verbatim was analysed using latent content analysis.Results: Preliminary results showed that the participants had different experience, good or bad, from both caring for a relative in the home and caring for a relative in a nursing home. The themes appearing after analyse were: for participants contextual situation “An unwanted lifestyle with changes in roles”, for participant’s description of collaboration with professionals “Getting resources or finding your own way.” and participant’s description of the information and communication was “Either safe or struggling”.Conclusion: For informal caregivers to feel safe with care and service for the person with dementia the information is needed to be individualised and personalised through the entire trajectory.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

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