当前位置： SCI文献检索 > INTERNATIONAL PSYCHOGERIATRICS期刊下所有文献 > Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road.

Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road.

Abstract：

BACKGROUND:Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers. METHODS:Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample. RESULTS:Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis. CONCLUSION:EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals' inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

journal_name

Int Psychogeriatr

journal_title

International psychogeriatrics

authors

van Vliet D,de Vugt ME,Bakker C,Koopmans RT,Pijnenburg YA,Vernooij-Dassen MJ,Verhey FR

doi

10.1017/S1041610211001013

subject

Has Abstract

pub_date

2011-11-01 00:00:00

pages

1393-404

issue

eissn

1041-6102

issn

1741-203X

pii

S1041610211001013

journal_volume

pub_type

杂志文章

在线工具

Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road.