‘It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia

Abstract

Accessible summary• People who care for someone with Down's syndrome and dementia were asked about what it was like being a carer. Four of the carers were brothers or sisters of the person who had dementia, and two were paid carers not family members. • All carers say that they want more information about some of the health and social problems that come with having dementia. • Carers said that they want to know more information and meet other carers and other people who have dementia. SummaryA qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.

Caregivers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis

“…Changes in personality, behaviour and loss of skills are early indications of possible cognitive decline in people with intellectual disability (Herron et al , 2020). However, behavioural changes or loss of skills can be viewed by carers as a natural decline, associated with a person’s intellectual disability (Herron and Priest, 2013; McLaughlin and Jones, 2011; Ryan, MacHale, and Hickey, 2018). This can result in a delay for people receiving post-diagnostic treatment (Carling-Jenkins et al , 2012).…”

Psychosocial interventions for people with intellectual disabilities and dementia: A systematic review

“…However, it is acknowledged that the routine care and support provided by intellectual disability staff and service providers is a substantive and important intervention for the care and support of this population. Therefore, the typical care and support afforded to individuals with an intellectual disability and dementia are included within this review (Iacono, Bigby, Carling‐Jenkins, & Torr, ; McLaughlin & Jones, ; Perera & Standen, ).…”

“…The outcomes of these studies suggest that staff can have a limited understanding of dementia, which leads to the adoption of strategies based on trial and error, which subsequently results in a lack of consistency across the team (Iacono et al, ). Therefore, staff require timely and effective support from specialist health services (McLaughlin & Jones, ). Staff also utilized a number of strategies to minimize personal stress to aid effective care for the individual, including: (a) holding a narrative of the individual as a person; (b) practical problem‐solving; and (c) compartmentalization of difficulties (Perera & Standen, ).…”

Down Syndrome and Dementia: Guide to Identification, Screening, and Management

“…28 Expectations for self-care and new learning must be readjusted and give way to an emphasis on a positive approach to the DS patient. 29 Families and caregivers need to proactively create a safe and calming home environment to promote quality of life. 30 As AD progresses, assessment of nonverbal communication is essential in the care of those with DS, but it may be challenging.…”