The oldest carers: A narrative review and synthesis of the experiences of carers aged over 75 years

Abstract

As populations age, numbers of older carers are increasing. These carers play a vital role in supporting others, often partners or spouses with dementia. This narrative review synthesised peer-reviewed evidence published over the last two decades concerning the experiences of carers aged over 75 years, specifically exploring whether their experiences differ from those of younger carers. Four electronic databases were searched and 4102 publications were identified. Eighteen studies involving over one thousand carer participants were included (11 quantitative, 6 qualitative, and 1 mixed-methods study). Most studies came from Europe or North America and almost all were cross-sectional, but few directly compared younger and older carers, making it difficult to determine whether carers' experiences vary with age. Quantitative studies generally emphasised the challenges of caring and frequently highlighted, for example, relationships between carer characteristics and negative outcomes such as burden. Qualitative studies were often more positive, emphasising carers' active responses and the rewards of caring. The normality of caring was highlighted, with some suggesting that caring may be less challenging for older than for younger carers. As with younger carers, being an older carer can be both rewarding and difficult. Our understanding of the experiences of these older carers would be enhanced with more research specifically comparing older and younger carers or comparing older carers and those not in a caring role. Carers are diverse and future research should explore the experiences of carers from different demographic groups. More longitudinal research perhaps focusing on caring dyads and mutual caring is needed.

Prevalence and predictors of psychosocial problems in informal caregivers of older cancer survivors - A systematic review: Still major gaps in current research

“…Regarding interventions to support informal caregivers, other systematic reviews mainly report that these should be approachable and adjusted to the needs of caregivers, to prevent the most vulnerable caregivers from being excluded (Applebaum & Breitbart, ; Bunn et al., ; Dias et al., ; Greenwood & Smith, ; Jones, Edwards, & Hounsome, ; Sansoni et al., ; Schoenmakers et al., ; Seal et al., ; Wheelwright, Darlington, Hopkinson, Fitzsimmons, & Johnson, ). To adjust interventions to the caregivers’ needs, further research is needed to compare caregivers of different gender and demographic backgrounds (Greenwood & Smith, , ; Sansoni et al., ; Schoenmakers et al., ). Also, they suggest more longitudinal research focusing on caring dyads and caregiving networks (Applebaum & Breitbart, ; Greenwood & Smith, ), because of their important influence on caregiver's psychosocial problems.…”

“…To adjust interventions to the caregivers’ needs, further research is needed to compare caregivers of different gender and demographic backgrounds (Greenwood & Smith, , ; Sansoni et al., ; Schoenmakers et al., ). Also, they suggest more longitudinal research focusing on caring dyads and caregiving networks (Applebaum & Breitbart, ; Greenwood & Smith, ), because of their important influence on caregiver's psychosocial problems. The results of other systematic reviews support our findings that all except two studies showed a tendency towards a higher prevalence of caregiver psychosocial problems, such as depression, compared to the general population (Bachner et al., ; Goldzweig et al., ).…”

“…Besides the difficulty to compare results, because of the sometimes conflicting results or unclear methods, they mainly report stress, anxiety and depression, to be positively correlated with a higher care burden, patient's poorer mental and physical health, and sleeping problems of the caregivers (McCurry, Logsdon, Teri, & Vitiello, 2007;Sansoni, Anderson, Varona, & Varela, 2013;Schoenmakers, Buntinx, & Delepeleire, 2010). Also, loneliness seems to be an important but underestimated psychosocial problem in caregivers (Greenwood & Smith, 2016). Caregivers also struggle with emotions, such as anger, worry, fear and guilt, which are difficult to deal with and they have the feeling of being invisible for the professional caregivers (Seal, Murray, & Seddon, 2015).…”

“…Caregivers also struggle with emotions, such as anger, worry, fear and guilt, which are difficult to deal with and they have the feeling of being invisible for the professional caregivers (Seal, Murray, & Seddon, 2015). Regarding interventions to support informal caregivers, other systematic reviews mainly report that these should be approachable and adjusted to the needs of caregivers, to prevent the most vulnerable caregivers from being excluded (Applebaum & Breitbart, 2013;Bunn et al, 2012;Dias et al, 2015;Greenwood & Smith, 2016;Jones, Edwards, & Hounsome, 2012;Sansoni et al, 2013;Schoenmakers et al, 2010;Seal et al, 2015;Wheelwright, Darlington, Hopkinson, Fitzsimmons, & Johnson, 2016). To adjust interventions to the caregivers' needs, further research is needed to compare caregivers of different gender and demographic backgrounds (Greenwood & Smith, 2015Sansoni et al, 2013;Schoenmakers et al, 2010).…”

What do we know about older former carers? Key issues and themes

“…The second stage involved hand searching these items for those that focused on older former carers. While the initial intention was to base the definition of 'old' on the criteria used to define older carers, these were discarded in the light of the evidence that there is no set definition of an older carerdefinitions vary from 50+ to 80+ (Milne & Hatzidimitriadou, 2002, Carers Trust, 2015, Manthorpe et al 2015, Greenwood & Smith 2016. As 60+ is routinely used in data collection (United Nations Department of Economic and Social Affairs, 2013), this was used to select items about 'older former carers'.…”