Navigating Everyday as Partners to Persons With Early Dementia: A Scoping Review.
Mille Vogelius Bøtchiær, Hanne Kaae Kristensen
PMID 40765032WHAT IT FOUND
Spouses caring for partners with young-onset dementia reported unmet needs for information, emotional support, respite, and service navigation.
They often felt isolated, exhausted, and unsupported. These are caregiver experiences, not proof that support programmes work.
Key findings
01The review grouped caregivers' unmet needs into five themes: psychoeducational, social, practical, emotional and psychological, and navigational and societal support.
02Spousal caregivers reported needing help balancing work and caregiving, financial assistance, respite, tailored services, and relief from constant vigilance, while often neglecting their own health.
03Caregivers described social isolation, loss of intimacy and identity, grief, and a need for safe spaces, recognition, and counselling.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This is a scoping review, so it maps reported experiences and unmet needs; it does not test whether any support service or intervention improves caregiver or patient outcomes. Most included studies were qualitative, and only one was cross-sectional, so the findings are descriptive rather than effect estimates. The review searched only English and Scandinavian-language peer-reviewed articles, so relevant studies in other languages may have been missed. It included only countries with healthcare systems comparable to Denmark, so service gaps may not transfer to other settings. The gendered differences came from one included study, so they should not be treated as a general pattern. Critical appraisal showed several studies could not tell how researcher relationships or ethical issues were handled. The review focused on spousal or partner caregivers and excluded results that could not be separated from other participants, so it may not represent children, other relatives, or healthcare professionals.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read the five themes as proof that dementia caregiver support programmes work. This scoping review mapped what caregivers said they needed, not outcomes achieved by any intervention.