Psychosocial impact of early onset dementia among caregivers

Abstract

The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

Do spouse caregivers of young and older persons with dementia have different needs? A comparative study

“…The needs expressed most frequently by all spouse caregivers involved finding ways to support the PWD's psychological, cognitive and physical development, to avoid exhausting themselves, and to fight social isolation. These results are consistent with the findings in the literature, which show a gradual focus of caregivers of PEOD or PLOD on the disease and the needs of the PWD . The theoretical model of caregiving by Pearlin et al proposed that caregivers are mobilized by the challenge of providing care to the PWD—specifically by challenges related the nature and intensity of the help and the PWD's needs and demands .…”

“…The theoretical model of caregiving by Pearlin et al proposed that caregivers are mobilized by the challenge of providing care to the PWD—specifically by challenges related the nature and intensity of the help and the PWD's needs and demands . Caregivers are preoccupied with this issue to the point of exhaustion, and they sacrifice their leisure pursuits and hobbies, restrict time with friends and family, and give up or reduce employment . Spouse caregivers' routines are restricted to caring for the PWD, which may explain the low frequency of needs expressed with regard to their own health.…”

“…Pearlin et al proposed that family conflicts concerning the help situation may be a significant stressor . Family members may not agree on the behaviours, attitudes, and decisions that caregivers must assume, which can create distance between family members and contribute to social isolation.…”

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

“…Several interesting observations emerge from an examination of these studies. First, the vast majority relied on qualitative methodologies (6)(7)(8)(9)(10). Second, several commonalities emerged regarding the objective and subjective difficulties that EOD family caregivers encounter, such as the process of obtaining an adequate diagnosis, the need to find appropriate services (10)(11)(12), managing financial changes (7,9,13), increased burden and strain (11,14,15) and poor quality of interpersonal relationships (9,14).…”

Young‐onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance

“…The lives of people with YO-AD also generally differ from those of older people with AD; they might have children living at home, be physically fit and even be part of the workforce. By extension, those differences generally mean that persons with YO-AD have needs that diverge from those of older people with AD (Baptista et al, 2016;Barca et al, 2014;Ducharme et al, 2015; Florence Centre for Specialized Care in Early Onset Dementia [Florence Centre], 2011;Haugen, 2012;Johannessen, 2012;Kimura et al, 2015).…”