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Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.
Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.
Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.
Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.
An integrated multidisciplinary approach to dementia is often recommended
but has rarely been evaluated.
To evaluate the clinical effects of an integrated multidisciplinary
diagnostic facility for psychogeriatric patients.
Patients suspected of having complex psychogeriatric problems were
randomly allocated to the intervention (n=137) or to
treatment as usual (n=93). They were assessed at
baseline, and at 6 months and 12 months follow-up by means of personal
interviews with the patient's proxy. The primary outcome was
health-related quality of life, assessed using the visual analogue scale
(VAS) of the EuroQd measure, EQ-5D.
Health-related quality of life had improved at 6 months in the
intervention group, whereas that of the control group had decreased.
Furthermore, more patients in the intervention group experienced a
clinically relevant improvement of 10 points or more on the VAS at both
An integrated multidisciplinary approach improves dementia care.
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