Week 8-Caregiving & Resilience

Question 1

What is a Carer?

Answer 1

 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!’

Question 2

Why study Carers? (Better Lives for People in Leeds, 2014)

Answer 2

-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

Question 3

Who are the unpaid carers? (NHS, 2010)

Answer 3

 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.

Question 4

What are some gender issues in Caregiving?

Answer 4

 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).

Question 5

Where can caregiving take place?

Answer 5

 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?

Question 6

What are some predictors of premature institutionalisation (i.e., people who could have stayed home for longer but ended up moving sooner)?

Answer 6

 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).

Question 7

What can impact a carer’s psychological wellbeing? (Newsom , 1999)

Answer 7

1. Helping characteristics (inappropriate amount, quality of help criticisms)
2. Relationship variables (relationship conflict, communication, reciprocity)
3. Caregiver variables (anger, depression, burden, social skills)
4. Care recipient variables (self-esteem, control, need for independence, impairment, pessimism)
5. 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

Question 8

What is Caregiver Burden?

Answer 8

 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)

Question 9

What are some Factors contributing to caregiver burden?

Answer 9

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)

Question 10

What’s the prevalence of dementia cases in the UK? (Alzheimer’s Society)

Answer 10

-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)

Question 11

What are Common dementia myths?

Answer 11

 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’

Question 12

What’s the Media Portrayal of Dementia?

Answer 12

3 common angles within media:
1. Scaremongering with dementia

2. Only focuses on celebrity’s experiences with it not the everyday person
3. Fake centenarian advice e.g., drinking this will reduce dementia (it’s always a correlation NOT causation)

Question 13

Who is Wendy Mitchell (1956 – 2024)?

Answer 13

 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

Question 14

What is Dementia caregiver burden like?

Answer 14

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.

Question 15

What is the impact of Burden in spousal dementia carers?

Answer 15

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.

Question 16

Which factors reduce caregiver burden?

Answer 16

 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.

Question 17

What was Caregiving like during COVID-19?

Answer 17

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.

Question 18

What is Research in focus? (Giebel et al., 2023)

Answer 18

 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.

Question 19

How does Carer vulnerability vs. carer resilience?

Answer 19

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)

Question 20

What is resilience?

Answer 20

 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.

Question 21

Masten (2001) described which 2 approaches to the study of resilience?

Answer 21

1. A Person Focused Approach
2. A Variable Focused Approach

Question 22

What’s a Person Focused Approach? (Masten, 2001)

Answer 22

 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).

Question 23

What’s a Variable Focused Approach? (Masten, 2001)

Answer 23

 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.

Question 24

So, what’s the best definition of resilience? (Windle, 2011)

Answer 24

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.

Question 25

We in Liverpool have examined resilience under which different adversities?

Answer 25

 Caregiving (e.g. Donnellan et al., 2015, 2017, 2018, 2021, 2022, 2023)

 Domiciliary carers (Donnellan et al., 2022)

 Chronic health (e.g. Windle et al., 2020)

 Widow(er)s (e.g. Bennett, 2010)

 Visual impairment (e.g. Thetford et al., 2015)

 Poverty (e.g. Bennett et al., 2016)

 To be continued…

 Commonalities across challenges: Resilience is a fundamental outcome in later life

Question 26

What did Joling et al. (2015) find about carer resilience

Answer 26

-Attempted to find a standardised definition of dementia carer resilience including carers and professionals

They both agreed that:
-Resilience comprises of individual and interpersonal factors

They disagree on:
-Resilience is a dynamic process (carers)
-Resilience is a positive outcone in response to adverse circumstances (professionals)
-Health not emphasised (carers)
-Health emphasised (professionals)

Dementia carer resilience is: Feeling competent to provide care as a carer, while facing substantial behavioural problems in the person with dementia.

Question 27

What are Key dimensions of carer resilience?

Answer 27

 Trait resilience predicts depressive symptoms (O’Rourke et al., 2010) and institutionalisation over time (Gaugler et al., 2007).

 Social networks and support moderate the effect of stress on carer resilience (Wilks & Croom, 2008).

 Multi-component carer services enhance resilience through improved quality of life, wellbeing and self-efficacy (Sörensen et al.,
2006).

 Resilience is determined by the interaction of individuals and their immediate and wider environments.

Question 28

What’s Windle & Bennett’s (2011) ecological resilience framework to carer resilience? FINISH THIS

Answer 28

1. Individual levels (psychological, biological, gender)
2. Community levels
3. Society levels

-There is no hierarchy but they all interact together

Question 29

What are the factors that facilitate carer resilience? (Donnellan et al., 2015)

Answer 29

 Can spousal dementia carers achieve resilience?

 Which assets and resources do carers draw on that facilitate or hinder resilience?

 How do these assets and resources map on to Windle and Bennett’s (2011) resilience framework?

 8 participants were resilient, 12 were not resilient.

A resilient carer was characterised as someone who:
 Stays positive; (individual level)
 Actively maintains their relationship and loved one’s former self; (individual)
 Is knowledgeable (individual);
 Is well supported by family but especially friends, with whom they share this knowledge (community);
 Is actively engaged with services such as respite care (societal).

However, some factors are only facilitating up until a point, after which they may become hindering.
 Individual: Access to disposable income
 Community: Family support perceived as over-intensive
 Societal: Timing of respite care
 Our findings emerge on individual, community and societal levels
 Supports the continued need to examine resilience from an ecological perspective.

Question 30

What was Donnellan et al’s (2022) study?

Answer 30

 Domiciliary carers facilitate ageing in place by promoting health, safety, and independence of PLWD and their carers.

Resilience associated with:
 Healthy boundaries
 Motivation to care
 Psychological attributes
 Managing work
 Support

Question 31

How is resilience measured?

Answer 31

 Current resilience measurement scales lack conceptual and theoretical adequacy and tend to primarily measure trait resilience (Windle & Bennett, 2011).

The benefits of measuring resilience in carers:
 An ecological resilience scale would enable researchers to more accurately
operationalise resilience and characterise the factors associated with resilience.

 Through identifying levels of resilience, policy makers and practitioners could
target support towards carers at highest risk (less resilient).

 Differential subscale scores would also identify specific resources that might
be abundant or insufficient in carers.

 This reflects current social policy recommendations that carer support should be tailored and personalised to individuals’ needs.

Question 32

Developing a resilience measure for unpaid carers: What is the current steps in the project?

Answer 32

Systematic methodological review:
1. Title and abstract screening
2. Full text screening
3. Quality assessment
4.Synthesis

Scale development:
1. Item generation
2. Expert review panel
3. Primary pilot study
4. Secondary pilot study

Question 33

What are some opportunities for digitally supporting carers? (Lariviere & Donnellan et al., 2020)

Answer 33

 An evaluation of a digital peer support
intervention for carers.

• Mobilise shared transcripts from daily Cuppas with research team from 20th March – 28th July 2020.
• Dataset corresponded to about 49 hours of Cuppas involving a total of 118 participating carers (i.e., chatting with a cup of tea and recording it for later self-usage).

 What resilience resources were carers
drawing on during the first national lockdown?
 Routine;
 Positivity and optimism;
 Peer support and sense of community.