scholarly journals Determinants of caregiver burden in early onset dementia

2020 ◽  
Vol 16 (S7) ◽  
Author(s):  
Annalisa Chiari ◽  
Barbara Pistoresi ◽  
Chiara Galli ◽  
Manuela Tondelli ◽  
Giulia Vinceti ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Early Onset ◽  
Early Onset Dementia

scholarly journals Determinants of Caregiver Burden in Early-Onset Dementia

2021 ◽  
pp. 189-197
Author(s):  
Annalisa Chiari ◽  
Barbara Pistoresi ◽  
Chiara Galli ◽  
Manuela Tondelli ◽  
Giulia Vinceti ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Caregiver Burden ◽  
Financial Distress ◽  
Early Onset ◽  
Disease Duration ◽  
Economic Status ◽  
Diagnostic Delay ◽  
Early Onset Dementia ◽  
Spousal Relationship ◽  
Status Data

<b><i>Introduction:</i></b> Caregivers of patients with early-onset dementia (EOD) experience high levels of burden, which is known to be affected by caregivers’ psychological features as well as by patients’ and caregivers’ demographical and social variables. Although potential clinical, demographical, and social determinants have been separately examined, it is not known how they reciprocally interact. <b><i>Methods:</i></b> Ninety-two consecutive patient-caregiver dyads were recruited from the Cognitive Neurology Clinics of Modena, Northern Italy. Caregivers were asked to fill in questionnaires regarding their burden, psychological distress, and family economic status. Data were analyzed with multivariable regression models and then entered in a mediation model. <b><i>Results:</i></b> Caregiver burden was positively related to female caregiver sex, spousal relationship to the patient, severity of patient’s behavioral symptoms, diagnostic delay, and financial distress of the family. It was negatively related to disease duration, patient’s education, region of birth, caregiver age, number of caregiver’s days off work, number of offspring, and caregiver perception of patient’s quality of life. While the effect of caregiver age, diagnostic delay, and of proxies of family or social network directly impacted on caregiver’s burden, the effect of patient’s disease duration, being a wife caregiver, financial distress, and number of caregiver’s days off work was entirely mediated by the level of caregiver psychological distress. <b><i>Conclusions:</i></b> Both direct actions (such as increasing social networks and shortening diagnostic delay) and indirect actions aimed at reducing psychological distress (such as increasing the number of caregiver’s days off work and financial support) should be planned to reduce caregiver’s burden.

A novel homozygous mutation in TREM2 found in a Chinese early-onset dementia family with mild bone involvement

2020 ◽  
Vol 86 ◽  
pp. 201.e1-201.e7 ◽  
Author(s):  
Xiantao Li ◽  
Yimin Sun ◽  
Lingyun Gong ◽  
Li Zheng ◽  
Keliang Chen ◽  
...  
Keyword(s):  
Early Onset ◽  
Bone Involvement ◽  
Homozygous Mutation ◽  
Early Onset Dementia

Interdisciplinary Clinic for Adults with Early Onset Dementia in a Mental Health NHS Trust

2006 ◽  
Vol 29 (4) ◽  
pp. 99-104
Author(s):  
S. B. N. Thompson ◽  
T. D. Coates ◽  
F. Chaâbane ◽  
P. Cherry ◽  
L. Collins ◽  
...  
Keyword(s):  
Mental Health ◽  
Early Onset ◽  
Early Onset Dementia

scholarly journals Unmet support needs of early-onset dementia family caregivers: a mixed-design study

BMC Nursing ◽  
2014 ◽  
Vol 13 (1) ◽  
Author(s):  
Francine Ducharme ◽  
Marie-Jeanne Kergoat ◽  
Renée Coulombe ◽  
Louise Lévesque ◽  
Pascal Antoine ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Early Onset ◽  
Support Needs ◽  
Mixed Design ◽  
Design Study ◽  
Early Onset Dementia

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

2011 ◽  
Vol 23 (9) ◽  
pp. 1393-1404 ◽  
Author(s):  
Deliane van Vliet ◽  
Marjolein E. de Vugt ◽  
Christian Bakker ◽  
Raymond T. C. M. Koopmans ◽  
Yolande A. L. Pijnenburg ◽  
...  
Keyword(s):  
Social Context ◽  
Health Care Professionals ◽  
Early Onset ◽  
Late Onset ◽  
Structured Interviews ◽  
Early Onset Dementia ◽  
The Social ◽  
The Family ◽  
Constant Comparative Analysis ◽  
Financial Issues

ABSTRACTBackground: 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.

TAU CYTOPATHOLOGY IN A PATIENT WITH FAMILIAL EARLY ONSET DEMENTIA

1998 ◽  
Vol 57 (5) ◽  
pp. 509
Author(s):  
M. Gearing ◽  
A. I. Levey ◽  
R. Jones ◽  
W. Walton ◽  
J. M. Shoffner ◽  
...  
Keyword(s):  
Early Onset ◽  
Early Onset Dementia

scholarly journals Experiences of influencing one's own life when living with working-age dementia

2021 ◽  
pp. 1-20
Author(s):  
Mervi Issakainen ◽  
Anna Mäki-Petäjä-Leinonen ◽  
Sirkkaliisa Heimonen ◽  
Ann-Charlotte Nedlund ◽  
Arlene Astell ◽  
...  
Keyword(s):  
Focus Group ◽  
Everyday Life ◽  
Early Onset ◽  
Relational Autonomy ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Workplace Education ◽  
Early Onset Dementia ◽  
Working Age

Abstract Having opportunities to make decisions and choices regarding one's life is crucial when living with dementia. This inter-disciplinary study draws on the concept of relational autonomy to explore how working-age people living dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life. The data consist of three focus group discussions conducted with 12 retired adults who developed dementia while still employed. The results illuminate various resources that enable a person to (a) handle their difficulties at work and related consequences with dignity, (b) manage everyday tasks and live a fulfilling life, and (c) fight the stigma associated with (working-age) dementia. Challenges related to these aspects reported by the participants reveal gaps and obstacles that impede the full realisation of the rights of people living with early onset dementia. This research highlights the need for workplace education for different stakeholders, equal and ongoing access to guidance and counselling for younger people who live with dementia, and an effort by society as a whole to eradicate stigma.

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