Caring for Caregivers: Challenging the Assumptions

Towards a Community-Based Dementia Care Strategy: How do We Get There from Here?

“…This second pillar highlights the crucial role of informal caregivers, the family, friends and neighbors who provide an estimated 70-90% of the everyday care required to maintain persons of all ages with ongoing health and social needs safely and appropriately in community settings. As recent expert reports in Ontario and elsewhere have observed, it is the contributions of informal caregivers that allow many older persons, including PLWD, to continue to live at home; without these contributions, formal care systems would not be sustainable (Williams et al , 2015a(Williams et al , 2015b).…”

“…In acknowledging and supporting informal caregivers, policy makers need to guard against simply "load shifting" onto individual family members (the majority of whom continue to be women) who may themselves experience a range of physical, emotional and mental health challenges because of caregiving activities. Rather than building informal caregiver capacity and resilience, this could produce the opposite outcome of increased caregiver burden and stress, leading to caregiver burnout and withdrawal and a decline of caregiver capacity (Health Quality Ontario 2016; Williams et al 2015aWilliams et al , 2015b.…”

“…Moreover, improved access to "before-thefact" community-based care can do much to support and sustain informal caregivers. The international evidence shows that it is family, friends and neighbors that do most of the heavy lifting in the community; they provide an estimated 70% to 90% of the everyday personal, instrumental and emotional care required by older persons to maintain their well-being and independence (Mittleman et al 2006(Mittleman et al , 2004Williams et al 2015a). Not only are informal caregivers the main reason why many older persons can continue to age at home, without informal caregivers, formal care systems would not be sustainable (Donner 2015;.…”

“…The impact on informal caregivers can be severe (Williams et al 2015a;MAS 2008;Mittleman et al 2006Mittleman et al , 2004. Although there are many positive aspects related to informal caregiving of PLWD (e.g., reciprocity of care, personal satisfaction), the experience can be difficult, leading to physical, emotional and financial strain and to caregiver fatigue, ill health and burnout (Fast 2015;Smale and Dupuis 2004a, 2004b, 2004c, 2004d.…”

“…Such supply-side challenges can help explain why many PLWD and informal caregivers do not access needed care until they are at the point of crisis (McAiney et al 2008;MAS 2008;Tootab et al 2013;Pratt et al 2006;Smale and Dupuis 2004a, 2004b, 2004c, 2004d. In addition to impacting negatively on the well-being of PLWD themselves, delayed access can limit opportunities for informal caregivers to develop proactive coping strategies, and the ability of formal providers to help them to do so, increasing the likelihood of physical and mental health problems, lost income, isolation, stress and burnout (Fast 2015;Peckham 2016Peckham , 2014bWarrick et al 2014;Williams et al 2015a).…”