Taking care of family dementia caregivers: A qualitative examination of patient perspectives and perceived health outcomes after receiving usual care and after a digitally supported care management programme

Abstract

AbstractBackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from a family or other informal caregiver. Evidence shows that family caregivers experience increased physical, psychological, emotional, and social stress which, in the long term, results in adverse health outcomes. The development of effective healthcare and support management for family caregivers is vital. Therefore, our aim was to examine and compare the perceptions of participants who received a digitally supported care management programme with those who received usual care.MethodThis study was embedded within a multi‐centre, cluster randomized controlled trial (GAIN study) examining the effectiveness of a care management programme for family caregivers of people with dementia. The trial is registered at ClinicalTrials.gov (NCT04037501). Data collected through semi‐structured interviews with participants of the GAIN trial were audio recorded, transcribed and analysed using framework analysis. We developed two semi‐structured interview schedules, each tailored to the content of the group (control or intervention).ResultWe interviewed 36 dementia caregivers (30 women, six men) of whom 20 were in the intervention and 16 in the control group. The mean age was 68 years (SD 11,28, range 50‐82). The majority was the caregiver for their spouse, six were the caregiver for their parent and one was the caregiver for their aunt. The lengths of interviews varied between 15‐82 minutes with most interviews being 35 minutes long. Six themes were identified: (1) Health and well‐being before participating in GAIN (2) Use of services and support (3) Perceived health changes (4) Additional services discussed & received in the intervention group (5) Impact of study nurse support and (6) Possible improvements. Each theme had further sub‐themes and categories, which will be presented.ConclusionOverall, participants in the care management programme reported benefits and additional services they used as a result of being in the intervention group (e.g., rehabilitation, home adaptations, care services) compared to the control group. Having someone professional by their side was reported to be helpful and motivating. Participants of both groups also reported that they preferred house visits rather than telephone contacts. The results can be used to further improve the care management programme.