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

Abstract

To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset.

What do family caregivers of people with dementia need? A mixed‐method systematic review

“…For mixed‐method studies, different study designs were adopted including a descriptive study within the context of community‐based participatory research (Bliss at al., 2013), an explorative mixed‐method study (Stirling et al., 2010), a mixed‐method (Ducharme et al., 2014) and a comparative study (Wawrziczny, Pasquier, Ducharme, Kergoat, & Antoine, 2017). In all of them, qualitative and quantitative analyses to explore caregivers’ needs were adopted.…”

“…In eight qualitative studies, data regarding the study design were missed (Ducharme et al., 2009; Kimura, Maffioletti, Santos, Baptista, & Dourado, 2015; Macleod, Tatangelo, McCabe, & You, 2017; McHugh et al., 2012; Millenaar et al., 2018; Peterson, Hahn, Lee, Madison, & Atri, 2016; Vaingankar et al., 2013; Werner et al., 2017) as well as in one mixed‐method study (Wawrziczny et al., 2017).…”

“…Social support meant also maintaining networks, relationships and opportunities for socialisation (e.g. McHugh et al., 2012; Wawrziczny et al., 2017) as when taking part in group meetings (Killen et al, 2016). Family caregivers reported multiple benefits from these meetings such as having the chance to talk about their own situation, exchanging information and knowledge, and hindering the sense of isolation (Killen et al, 2016; Millenaar et al., 2018; Muangpaisan et al., 2010; Werner et al., 2017).…”

“…For the second domain, the need for service information, family caregivers needed them to navigate the formal care service systems (Hirakawa et al., 2011; Samson et al., 2016). Caregivers who had been guided and received tailored information regarding available services were satisfied and able to ask for help at the right services when needed (Millenaar et al., 2018; Wawrziczny et al., 2017). On the other hand, those who received poor information and guidance from services reported dissatisfaction and feelings of isolation and frustration (Flynn & Mulcahy, 2013; Macleod et al., 2017; Millenaar et al., 2018; Stirling et al., 2010).…”

Being ‘alone’ striving for belonging and adaption in a new reality – The experiences of spouse carers of persons with dementia

“…Tuomola, Soon, Fisher, and Yap (2016) found that spouses reported insufficient rest, guilt, a loss of sense of self and an acceptance of their caring role as their destiny, while Tyrrell et al (2017) found that due to the person with dementia's need for constant supervision, spouses' social life and recreational activities were significantly reduced. Other research has similarly found that the lives of spouse carers of persons with dementia become so focused on their caring role that they abandon leisure activities and social relations leading to isolation, distress, self-criticism, guilt, depression and lower life satisfaction (Liu et al, 2017;Pertl, Lawlor, Robertson, Walsh, & Brennan, 2015;Wawrziczny, Pasquier, Ducharme, Kergoat, & Antoine, 2017).…”