Benefits and burdens: family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Abstract

The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies. Implications for Rehabilitation Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT. The simpler the AT, the better. The AT should be introduced at "the right time", before the cognitive and adaptive reduction is too great. The "window" for implementation may be short. AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to. A system for individualized support over time is necessary for implementing AT for this group.

Evaluating the Facilitators, Barriers, and Medical Outcomes Commensurate with the Use of Assistive Technology to Support People with Dementia: A Systematic Review Literature

“…In the interest of brevity, only the first 60% will be listed. The intervention most often noted was an interview [3,[22][23][24][25]29,31,39,43,44,49,57,59,61,63,65]. Researchers interviewed users of AT (PWD and carers) in 16/48 studies (33%).…”

“…The most common form of bias was selection bias. Examples of selection bias were all: participants had experience with technology [23], same site [25,28,30,34], or a disproportionately large sample that was male [22,30,36]. These examples of bias limit the external validity of the results.…”

“…Three of these studies originated from Sweden, and two were from Canada, while the rest were from single originations: Netherlands, Netherlands/Germany/Belgium. The theme increased safety (increases a sense of security, increases safety) occurred in 6/68 occurrences (9%) [3,25,30,35,41,57]. These studies all came from single originations: Netherlands, Sweden, Norway, United States, New Zealand, and United Kingdom.…”

Caring by telecare? A hermeneutic study of experiences among older adults and their family caregivers

“…A study by Berge () showed that family caregivers’ primary concern is safety, and the caregivers encourage use of telecare as they expect it to enhance safety. Previous research has shown that technology may help reduce family caregivers’ perception of task‐specific burdens (Mortenson et al, ) and provide increased feelings of relief (Holthe, Jentoft, Arntzen, & Thorsen, ), which is important in the light of the stress the family caregivers may experience.…”

“…After years of trials and a policy of using telecare to promote active ageing and ageing in place, there is a need for a better understanding of persistent engagement with telecare (Cook et al, ; Karlsen et al, ; Lynch, ) from older adults and their family caregivers’ perspectives (Holthe et al, ). The present study seeks to enrich insight into clinical practice and models of telecare service delivery, by exploring how telecare may meet the older adults’ needs.…”