Rural dementia carers: formal and informal sources of support

Abstract

Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

“…Those living in the remote locations had fewer service options but referred to the strong sense of familiarity as impacting positively upon the type of care received as well as on their ability to access available services. This finding was congruent with other studies conducted in rural locations that describe the benefits of social capital and personal relationships with providers in facilitating service access and enhancing personalised care (Blackstock, Innes, Cox, Smith, & Mason, 2006;Davis & Bartlett, 2008;Orpin et al, 2014).…”

“…Broader carer issues raised in our study concur with other research about carers' reluctance to accept services (Brodaty, Thomson, Thompson, & Fine, 2005;Hansen et al, 2005;Orpin et al, 2014), the negative impact of caring on carers' own health (Cuijpers, 2005), and the impact of leaving paid employment in reducing their social networks (Milligan, 2006;Winterton & Warburton, 2011). Our study supports the findings of Milligan (2006) which highlighted the inter-relationship of carers' own health to the health of the care-recipient and postulated that shared decision making between carers and workers could reduce stress experienced by the carer.…”

“…In our study, carers highlighted the value of the relationship with the worker and the older person as well as the importance of social contacts for the older person. This aligns with research exploring what consumers want from services from both the carer perspective (Innes et al, 2011;Innes et al, 2014;Orpin et al, 2014) and service user perspective (Bastiaens, Van Royen, Pavlic, Raposo, & Baker, 2007).…”

“…Carers liaised with workers across sectors and reported difficulties in identifying service options as well as communication with and between services. The complexity of health servicing is likely to have contributed to the challenges carers experienced when navigating access to help (Orpin et al, 2014;Innes et al, 2011;Innes, Szymczynska, & Stark, 2014). A recent study exploring access to health and social care services from the perspective of dementia carers in the UK recommended that support is provided to help carers navigate the complex service landscape (Peel & Harding, 2014).…”

“…Fragmented service systems havebeen found to have a negative impact on rural carers who seek to access and navigate services for people with dementia (Orpin, Stirling, Hetherington & Robinson, 2014;Peel & Harding, 2014;Morgan et al, 2014;Di Gregorio, Ferguson & Wiersma, 2015). Barriers to accessing services include health professionals and carers' lack of awareness of services (Di Gregorio et al, 2015;Hansen, Robinson, Mudge & Crack, 2005) and lack of communication between professionals and with carers (Hansen et al, 2005).…”