Family Caregivers' Experiences With Follow-Up Healthcare for Frontotemporal Dementia: A Narrative Inquiry.
Hege Rasmussen Eid, Kristin Berre Ørjasæter, Ingunn Bosnes
PMID 40926721WHAT IT FOUND
Family caregivers of people with frontotemporal dementia felt sidelined when patients still had consent capacity, and said staff lacked FTD knowledge, leaving care unsafe and not personalised.
Key findings
01Caregivers felt sidelined when the person with FTD still had competence to consent, limiting their involvement in follow-up care.
02Caregivers reported that staff lacked FTD expertise and that care was not personalised or safe.
03Being spoken with alone during specialist assessment made caregivers feel their observations were valued and included.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The findings come from a small group of family caregivers, so they cannot be assumed to apply to all families affected by FTD. The interviews were collected in Norway several years before publication, so current services and pandemic-era changes may differ. The analysis presents constructed scenario narratives rather than each caregiver's full account, so some details may be blended. The authors' clinical backgrounds shaped the interpretation, and this reflexivity was acknowledged. The study reports experiences and barriers, not patient outcomes or the effect of any intervention.
Declared interests
The authors declared no conflicts of interest. Nord universitet is listed as the funder.
The easy way to misread this
Do not read this as evidence that including family caregivers improves care or that FTD-specific staff training works; it reports caregivers' experiences and barriers, not tested outcomes.