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.

From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences

“…[21][22][23] Studies of individuals undergoing assessment (and of their carers) have revealed equivocal views about the adequacy of information supplied, 24 and concerns about clinicians' ability to identify information needs and respond effectively; 25 observations that have similarly arisen in the Netherlands. 26,27 A literature review undertaken as part of the current study, which focused on the process of disclosure of dementia diagnosis, revealed wide variability in reported practice, with theoretical 'guidelines' that did not reflect practice. 28 Disclosure was rated by primary care physicians as causing difficulties in the management of individuals with dementia, who were less likely to use the correct terminology with patients and family members than psychiatrists.…”

Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

“…As opposed to the characteristic memory loss in AD, early stage FTD is predominantly characterized by personality and behavioral changes or language deficits [5]. Behavioral changes are common debut symptoms in YOD [6, 7], and often misattributed to stress or depression. However, the phenotype of AD in younger people may also diverge from what is seen in older people, with atypical presentations [8] contributing to misattribution of symptoms and prolonged time to diagnosis [2, 9].…”

The emotional well-being of young people having a parent with younger onset dementia

“…In a Dutch sample of 92 people living with YOD (van Vliet et al, 2011(van Vliet et al, p. 1396, it was noted that one had an unborn child at the onset of diagnosis, seven had children between 0-10 years, thirty between 11-20 years, seventy-seven between 21-30 years, and forty-eight had children over 30 years of age. Seventeen patients within this sample had a total of 23 children living at home.…”

“…Three quarters of parents who were not affected by YOD consider their children to be impacted emotionally by having a parent with YOD (Allen et al, 2009, p. 456;Luscombe et al, 1998, p. 326). There were many stresses for young people living with a parent with YOD, particularly with 'feelings of hopelessness, embarrassment and irritation' (Thompson, 2012, p. 24;van Vliet et al, 2011van Vliet et al, p.1397. Typically shame of their parents' behaviour caused social isolation, for example, where friends were not invited to their house which further impacted their relationship with their parent (Thompson, 2012, p. 24).…”