Coping with dementia and older families of adults with Down syndrome

Abstract

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.

Improving services for people with learning disabilities and dementia: Findings from a service evaluation exploring the perspectives of health and social care professionals

“…In 2010, a review found a lack of research focusing on dementia care for people with learning disabilities (Courtenay, Jokinen, & Strydom, ). Since then, there has been some research into components of care, staff knowledge and management strategies and environmental factors for people with learning disabilities and dementia living in group homes and special care units (De Vreese et al., ; Janicki, Zendell, & DeHaven, ; Iacono, Bigby, Carling‐Jenkins, & Torr, ). Initial small‐scale studies of the use of reminiscence therapy, Singing for the Brain sessions and personalised life story books and rummage boxes suggest that these interventions are acceptable to people with learning disabilities and staff and have the potential to lead to positive outcomes such as supporting communication, memory, social engagement, choice, mood and well‐being (Crook, Adams, Shorten, & Langdon, ; Stueber & Hassiotis, ; Ward & Parkes, 2015).…”

“…dementia, down syndrome, health and social care policy and practice, intellectual disability, learning (intellectual) disabilities, palliative and terminal care, staff training homes and special care units (De Vreese et al, 2012;Janicki, Zendell, & DeHaven, 2010;Iacono, Bigby, Carling-Jenkins, & Torr, 2014). Initial small-scale studies of the use of reminiscence therapy, Singing for the Brain sessions and personalised life story books and rummage boxes suggest that these interventions are acceptable to people with learning disabilities and staff and have the potential to lead to positive outcomes such as supporting communication, memory, social engagement, choice, mood and well-being (Crook, Adams, Shorten, & Langdon, 2016;Stueber & Hassiotis, 2012;Ward & Parkes, 2015).…”

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

“…Accounts of the experiences of people with Down syndrome and dementia from their own perspective are extremely limited with research recommending inclusion in further studies to understand this perspective first hand (Hahn, Fox, & Janicki, 2015;Strydom et al, 2009). A wider range of research is available that focuses on the process of screening and diagnosis of dementia in people with intellectual disabilities (Carr & Collins, 2014;O'Caoimh, Clune, & Molloy, 2013;Moriconi, 2015;Nieuwenhuis-Mark, 2009) or on observations from the perspective of family members (Carling-Jenkins, Bigby, & Iacona, 2012;Janicki, Zendell, & DeHaven, 2010) and staff (McCarron, McCallion, Fahey-McCarthy, Connaire, & Dunn-Lane, 2010).…”

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

“…Comparing subjective and objective measures of burden, few differences have been found between staff carers in ID service settings and foster family situations (McCallion, Nickle, & McCarron, 2005). Little work exists reporting specifically on caregiving in the family context (an exception is Janicki, Zendell, & DeHaven, in press). What can be gleaned from the broader literature is that families appear to have limited involvement and little input regarding dementia care as it affects their relative (Janicki et al., 2005; Wilkinson, Kerr, Cunningham, & Rae, 2004).…”