Week 8 RF-Who cares for the carer? Flashcards
What are some Key dementia statistics?
■ Dementia is a progressive (gets worse over time) syndrome associated with deterioration in cognitive function beyond normal ageing (WHO, 2016) (i.e., isn’t normal cognitive loss).
■ 920,000 people currently living with dementia in UK, projected to exceed 1 million by 2024 (Wittenberg et al., 2019).
■ 61% of older adults living with dementia being cared for in their own homes by loved ones so implications for how we support carers (Social Care Institute for Excellence, 2020).
■ Over 700,000 unpaid carers of PLWD in UK (Alzheimer’s Research UK, 2015).
■ 73% of carers of PLWD reported that caregiving responsibilities increased during COVID-19 (Alzheimer’s Society, 2020)
What are the statistics in Spousal dementia care?
■ Dementia care is uniquely stressful (Potgieter et al., 2012).
■ Carers of PLWD report higher levels of burden compared to non-dementia carers + elicits worse mental and physical health outcomes (Kim & Schulz, 2008).
■ 26% of primary carers are providing care to a spouse (NHS, 2010) (BUt most prominent care is given to parents).
■ Spousal carers provide the most hours of care and experience age-related physical (Pinquart & Sörensen, 2007), cognitive (Kim et al., 2012), and mental impairments (Pinquart & Sörensen, 2003).
■ Burden in spousal carers exacerbated by closer relationship ties (Etters et al., 2008) e.g., guilt, shame even if struggling with own health conditions.
■ Spousal carers receive less informal support and disengage from existing social networks over time (Clay et al., 2008; Hough et al., 2005).
What are Social networks in dementia care like for carers?
■ Social networks refer to the structural character of social relationships e.g., how many friends, how far they live etc., (Soulsby & Bennett, 2015).
■ Spousal carers most likely to be supported by pre-existing informal social networks (Antonucci et al., 2011).
■ Larger social networks associated with
– Increased subjective wellbeing (Walsh, 2012).
– Greater availability of instrumental and
emotional support.
■ But what type of support do these people provide? (usually just quantitative)
■ How is this support perceived by spousal carers?
What is Social support in dementia care like for carers?
■ Social support refers to a transactional process whereby relationships provide a platform for the exchange of emotional and practical support (Soulsby & Bennett, 2015).
■ 5 distinct dimensions (Sherbourne & Stewart, 1991)
– Emotional; Affectionate (people you can exchange affection and intimacy with); Informational (advice and guidance); Tangible (another word for informational support); Positive Social Interaction (going out having fun) (the more of these support types we have the better).
■ Effect of social support depends on the outcome and group
– Tangible and informational support mediate stress and subjective well-being in older adults (Pinquart & Sörensen, 2000).
– Affectionate support and positive social
interaction reduces psychological burden and major depressive disorder in carers (Han et al., 2014).
■ How does this support vary between family and friends, actual vs perceived support? (how do we interact the social network with the social support?)
What is Social support in dementia care like for carers? (friends vs family; actual vs perceived support)
■ Family vs. friends (Pinquart & Sörensen, 2000)
– Emotionally close relationships with family more important than friends for carers (i.e., support more)
– Frequent contact with friends more important than family (i.e., see more)
– ‘Intimacy at a distance’ (Rosenmayr, 1983) (they value family but want to be independent from them as long as possible)
■ Actual vs. perceived support
– Positive perceptions of support mediates social support and subjective well-being (Ellwardt et al., 2013).
– Increased satisfaction with support mediates carer support interventions and lowers depression further (Roth et al., 2005)
-The presence of support boosts physical and mental health BUT the perceivedness of the support is a key mediator
How can Social support act as a resilience
resource?
■ Resilience is the “process of effectively
negotiating, adapting to, or managing
significant sources of stress or trauma” (Windle, 2011).
Windle & Bennett’s (2011) ecological resilience framework:
– Carers draw on individual and
environmental resources (non-hierarchical: one isn’t more important than the other; non-discreet: they all interact with each other) to facilitate their capacity for resilience (Donnellan et al., 2015).
■ Perception ≥ availability of support
– Social networks facilitate resilience only if
they are perceived as helpful (Ellwardt et
al., 2013).
– Little research on social support and
resilience in carers.
What was involved in the methods for Donnellan et al’s (2017) study?
-23 participants
-Gender F:M = 16:7
-Age 62-89 75 (±7.46)
-Marriage duration 28-61 49.61 (±7.14)
-Care duration 2-10 5.44 (±2.64)
■ All retired, 3 widowed, 1 PLWD admitted into a residential care setting.
Data collection and analysis:
■ Semi-structured interviews
– Open-ended, chronological (factual questions, then pre-dementia, dementia diagnosis then the present) and retrospective (looking back to the past) approach
■ Three-stage hybrid method (Bennett et al., 2016; Donnellan et al., 2015; Thetford et al., 2015)
1. Grounded theory used to read and code the interviews;
2. Re-read interviews to identify the type of support provided and who provided it;
3. Re-examined stage 1 codes to explore how support was perceived.
What are the findings of Donnellan et al’s (2017) study? (Family Support)
■ Availability of family members and friends by resilience classification
Children:
■ Daughters provide a wider variety of support than sons
■ Carers prefer ‘intimacy at a distance’, but non-resilient carers are more likely to actively resist children i.e., greater intimacy at a distance.
“I didn’t tell them [daughter and son] a lot of the things that were going on because they had their own problems, their own families to see to. (Mrs G. NR).”
In-laws:
■ Rarely available and narrow support functions.
■ Non-resilient carers more likely to actively resist in-laws
Grandchildren:
■ Available more to non-resilient carers, serving narrow support functions.
■ ‘Intimacy at a distance’ but non-resilient carers do not resist grandchildren.
What are the findings of Donnellan et al’s (2017) study? (Friend Support)
Group friends:
■ Provide a wide variety of support functions.
■ Support group (i.e., people going through the same stuff) friends serve the widest support functions
Existing friends:
■ Resilient carers more likely to receive support from those with shared
experiences.
■ Non-resilient carers have more existing friends that have ‘dropped out’.
Neighbours:
■ Available more to resilient carers, serving narrow support function.
■ Serve an important crisis management function (e.g., someone said they helped them when their loved one went missing).
What is a summary of Donnallen et al’s (2017) findings?
■ Resilient and non-resilient carers have structurally and functionally similar support characteristics
– Resilient carers no more likely than non-resilient carers to have family and friend support available to them.
– Family and friends serve a range of support functions, but mostly equal across resilient and non-resilient participants.
■ Social networks and social support are not always sufficient to facilitate resilience.
How do social relationships facilitate resilience?
■ Most carers spontaneously and consistently demonstrated ‘intimacy at a distance’ when discussing family.
– Non-resilient more likely to actively resist children and in-law support.
■ Shared experience among friends may facilitate resilience.
– Lack of shared experience may explain ‘drop out’ of existing friends.
■ So, support facilitates carer resilience only if perceived as helpful and congruent with their needs.
What is the evaluation of Donnallen et al’s (2017) study?
Strengths:
-Included relatively unstudied social networks, including new networks.
-In-depth qualitative methodology
Limitations:
-Qualitative research precludes (makes it impossible/prevents) causality
-Elite sample
Future directions:
-Carer dyads
-Longitudinal effects of support
What is an overall summary of this lecture?
■ We may have previously over-prioritised social networks and failed to recognise the full complexity of social support in informal dementia care.
■ Practical attempts to reduce loneliness or increase the number of social relationships may be futile.
– Carers should be supported by a small number of emotionally supportive family members and like-minded friends with shared interests.
■ Certain support members, such as existing friends, may be at risk of ‘dropping
out’, and so extra effort should be made to maintain these friendships where necessary.
