Week 8-Caregiving & Resilience Flashcards
(33 cards)
What is a Carer?
Carer: ‘A person who provides direct care for children or the chronically ill (The Merriam-Webster Dictionary, 2001).
Informal carer: ‘anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support (Carers Trust, 2021).
As opposed to formal care: i.e. domiciliary care, district nursing, volunteering, respite services and adult day care (there is a difference between healthcare and social care).
‘In(formal) terminology has recently come under scrutiny; ‘there is nothing informal about what I do for my Dad!’
Why study Carers? (Better Lives for People in Leeds, 2014)
-6.5 million people are unpaid carers in the UK (1 in 8 adults)
-By 2037, it is anticipated that the number of carers in the UK will increase to 9 million
-More than one in five people aged 50-59, provide some unpaid care (1.5 million people across the UK)
-Carers save the UK economy 119 billion pounds every year
-Every day, another 6000 people take on a caring responsibility (that’s over 2 million people a year)
-3 in 5 of us will be a carer at some point in our lives
Carers across the UK:
-Northern Ireland: 214,000 carers
-Scotland: 516,000 carers
-Wales: 370,000 carers
-England: 5,430,000 carers
-Likely this is an underestimate due to it being pre-covid
Who are the unpaid carers? (NHS, 2010)
Adult children (58% of all primary carers are the parent’s children)
Spouses (26%)
Parents
Other relatives, friends, neighbours, etc.
‘Sandwich generation’ (usually middle-aged people who look after their parents and their own children)
Filial obligation: to care for one’s parents when necessary
Care Hierarchy: Daughters, daughter-in-laws, then sons.
What are some gender issues in Caregiving?
Caregiving is largely seen as women’s work (Why might this be damaging for men and women? may be emasculating for men or they step away from responsibilities. For women it may add additional stress and reinforces gender stereotypes).
Russell (2007):
Elderly male carers feel invisible but are fully committed to the role and use managerial/nurturing style (i.e., approaches they used in their work lifestyle treating it like work).
Calasanti & King (2007): Taking ‘women’s work’ ‘like a man’
More difficult for women carers; expectation and less delegation.
Men: ‘You pick it up like you do a trade’.
Men carers are more depressed over time, whereas women are more stable i.e., do take a hit but stabilise over time with the opposite seen for men (Schulz & Williamson, 1991).
Where can caregiving take place?
Home
Adult day care centres (often local authority provided but also private typically)
Assisted living facility
Hospital
Care or nursing home
Hospice
‘Ageing in place’
But home care can be more stressful (Stajduhar, 2003)
Only feasible up until the point of chronic illness?
What are some predictors of premature institutionalisation (i.e., people who could have stayed home for longer but ended up moving sooner)?
When caregivers provide assistance with 3-6 ADLs (i.e., activities in daily living e.g., bathing, eating, personal care etc.,)
Carer unable to leave care recipient alone
Severe behavioural symptoms: e.g. aggression and non-compliance despite no prior behaviour like this
Caregiver health
Emotional distress experienced
Long-term carers and spouses are less likely to take this option (Zarit et al., 2006).
Institutionalisation may remove/reduce caregiving stressors and elicit short- and long-term improvements in psychological health (Donnellan et al., 2018).
What can impact a carer’s psychological wellbeing? (Newsom , 1999)
- Helping characteristics (inappropriate amount, quality of help criticisms)
- Relationship variables (relationship conflict, communication, reciprocity)
- Caregiver variables (anger, depression, burden, social skills)
- Care recipient variables (self-esteem, control, need for independence, impairment, pessimism)
- Situational variables (pain, mood, life events, conflict)
-All of these factors interact with both the carer’s negative reactions and interactions with the caregiver (e.g., help, support, conflict) which ultimately impacts psychological wellbeing
What is Caregiver Burden?
A multidimensional, subjective response to physical, emotional, social, and financial stressors associated with the caregiving experience (Polgar-Bailey & Takeuchi, 2000).
E.g. emotional upheaval, medical morbidity (i.e., due to worse health), reduction in number of social contacts, family conflict, vocational challenges, financial strain.
Links to negative outcomes for carers in relation to illness, depression and poor quality of life (Schulz et al., 2006)
What are some Factors contributing to caregiver burden?
Pinquart and Sörensen (2003)
Strong association between caregiver burden/depression and care recipient behaviour problems.
Increased care provision associated with reduced uplifts, including: caregiving satisfaction; enjoyment; and closeness.
Spouses more burdened than parental carers.
Pinquart and Sörensen (2007)
Increased age, lower SES and lower levels of informal support associated with poorer physical health.
Spousal carers have better physical health than parental carers.
-May be some sampling bias as spousal carers likely have better physical health than parental carers and would have took place as a result in the study (CHECK RECORDING)
What’s the prevalence of dementia cases in the UK? (Alzheimer’s Society)
-Shows the latest statistics and projections of people with dementia in the UK categorised into age
-The rise in dementia in the UK is increasing including diagnosis rates
-The older you are, the more likely you are to have it (over 85, there is a 1 in 3 chance whereas 100 and over is 1 in 2 - however not many people live that long so may be skewed)
What are Common dementia myths?
Dementia = Alzheimer’s disease and memory loss (AD is a cause of dementia due to an underlying brain condition, whereas dementia is a syndrome due to a cluster of symptoms i.e., is a type at best + memory loss isn’t usually the first symptom of dementia and sometimes people don’t experience this as severely)
Only affects older people
Life is over
Issues around language: ‘People with dementia’, ‘people who provide care’ is typically preferred vs Dementia ‘sufferer’, ‘demented’, ‘senile’, ‘burden’, ‘informal carer’
What’s the Media Portrayal of Dementia?
3 common angles within media:
1. Scaremongering with dementia
- Only focuses on celebrity’s experiences with it not the everyday person
- Fake centenarian advice e.g., drinking this will reduce dementia (it’s always a correlation NOT causation)
Who is Wendy Mitchell (1956 – 2024)?
Best-selling author, dementia campaigner and living proof that life goes on with dementia
-She was diagnosed with young-onset dementia
-Spoke what it was like with dementia and spoke positively as an optimist
-Became a voice on assisted dying
What is Dementia caregiver burden like?
WHO (2016) define dementia thus:
A progressive syndrome associated with deterioration in cognitive function beyond normal ageing.
Dementia care is uniquely stressful (Potgieter et al., 2012):
Continuous, intense and unpredictable stressors (people present differently depending on where the damage is in the brain)
Extended course of the disease
Dementia carers report higher levels of burden compared to non-dementia carers (Kim & Schulz, 2008)
Etters et al. (2008):
Spousal carers are more burdened by dementia caregiving than other family members.
Closer relationship ties was associated with increased burden.
What is the impact of Burden in spousal dementia carers?
Interpersonal impact (Gladstone, 1995):
‘Marriage as a memory’; loss of companionship
‘Illusory marriage’; ambiguous (what are they anymore? are they a wife? a carer? a stranger?)
‘Changed marriage’; like friends, mother/child.
‘Marriage as unchanged’; just another stage.
Marital communication (Braun et al., 2010):
Reciprocity of positive and negative communication is particularly important in dementia.
Carers whose husbands used positive communication reported less depression, especially when reciprocated by carer
Positive communication may be a protective buffer.
Which factors reduce caregiver burden?
Positive cognitions (Zausniewski et al., 2009) e.g., Optimism and self-esteem.
Ross et al. (2003):
Personal satisfaction, fulfilment, meaningful relationships, tolerance and being able to remain with care recipient.
Managing stress through informal support, exercise such as taking a walk, religion, hobbies and regular time out.
Positive motivations and meanings (Quinn et al., 2010)
Innovative strategies (Russell, 2001) (their person with dementia wanted to go home even though they were already home, so he drove them around for 30 minutes came back home and said they were home which worked)
Social support:
Moderates the impact of burden on depression.
Kinship versus friendship:
Late-life friendships more important than kinship (Rawlins, 2004).
Pinquart & Sorensen (2003):
Family structurally-determined and associated with negative social exchange and dependence (e.g., association of negative experience with negative emotions).
Friends selected and more synonymous with the ‘good old times’ and independence.
What was Caregiving like during COVID-19?
Office for National Statistics (2020)
* About 1/3 of adults reported giving help or support to someone they did not previously support before the pandemic.
* 1/3 also reported giving more help than prior to the pandemic.
- Carers UK (2020) estimated 9.1m total carers in the UK increasing to approximately 13.6m during the first lockdown.
- 64% of carers unable to take breaks from caring during the initial pandemic period;
- 74% felt exhausted and worn out;
- Only 30% had a sufficient support network
- 48% felt unable to keep in contact with neighbours, families and friends.
What is Research in focus? (Giebel et al., 2023)
Systematic review of enablers and barriers to social care service usage in people living with dementia and their carers pre-pandemic and beyond.
Enablers and barriers were categorised into five themes:
1. Situational (family situation, dynamics)
2. Psychological (ability to stay positive)
3. Interpersonal (how people got along with families looking at communication)
4. Structural (government legislation)
5. Cultural (services not typically culturally sensitive and tailored)
Very few enablers identified, mainly barriers (says something in itself)
Evidence of inequalities to service access and usage.
How does Carer vulnerability vs. carer resilience?
Caregiving research has focused on:
Deficit models (glass half empty, barriers)
Ill-health
Poor mental-health
Less with a focus on:
Why, given their stressful lives, are all carers not burdened?
Why do carers with the same stressors respond in different ways?
-Some become burdened
-Some become stronger
If we focus on the latter – the resilient – we may be able to help the former (Fergus & Zimmerman, 2005)
What is resilience?
Dictionary vs. research-based definitions
Resilience originates from the Latin ‘resilire’ (to leap back).
General dictionary definitions note that:
The noun ‘resilience’ is a derivative of the adjective ‘resilient,’ which has two
uses:
1. ability to recoil or spring back into shape after bending, stretching, or being
compressed;
2. (of a person) ability to withstand or recover quickly from difficult conditions.
Masten (2001) described which 2 approaches to the study of resilience?
- A Person Focused Approach
- A Variable Focused Approach
What’s a Person Focused Approach? (Masten, 2001)
Identifying groups of individuals who show similar patterns of resilience (i.e., the who not the how)
Often used to classify people as resilient or not, for example (Donnellan et al.,
2015):
Significant challenge;
No obvious sign of (di)stress;
Maintenance of a life of meaning and satisfaction (a sign of bouncing back);
Active participation in life (a sign of managing)
Current life seen as positive (a sign of adaptation).
What’s a Variable Focused Approach? (Masten, 2001)
The underlying protective factors and mechanisms that moderate the impact of
adversity (i.e., the how not the who).
Psychological resilience buffers adversity, leading to positive adaptive outcomes (Rutter, 1987).
Windle et al. (2010):
Psychological resilience moderates the relationship between ill-health and
subjective wellbeing in over 60s.
Kalisch et al.’s (2015) PASTOR:
Positive appraisal (look) solely moderates the relationship between adversity and
health.
So, what’s the best definition of resilience? (Windle, 2011)
The process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. Assets and resources within the individual, their life and environment facilitate this capacity for adaptation or ‘bouncing back’ in the face of adversity.
