O4.2 Informal care
Chair: Heidi Gautun
O4.2.1 The informal caregivers of persons with dementia experiences and needs in the
Tallinn University/Tartu Health Care College, Estonia
During the time of the illness, people with dementia become increasingly dependent on the care of their family members. The caregiver has challenges to provide care for years and they are under high level of physical and emotional pressures. The aim of the study was to describe and analyze the experiences and needs of informal caregivers regarding the caring process with their relatives with dementia based on the narratives. The research questions were: How do informal caregivers of older people with dementia experience their role as a caregiver and how that affects their life?
The study is based on narrative approach.Sample was purposive and used also snowball sampling. During from February to May in 2017 narratives were carried out with 16 caregivers from different Estonian counties. Interviews were thematically analyzed using inductive data coding.
The study showed that informal caregivers have difficulties finding information aboutdementia and they lack knowledges how appropriately take care of their family members. They perceived role conflicts, mental and physical strain and negative changes in their lifestyle.
The informal caregivers need more counseling and psycho-emotional support, information, recommendation and different support services regarding persons with dementia. Social and health care politicians should focus on the development of health and social welfare coherence and develop supportive services and activities for the person with dementia and their family members. Providing support to informal caregivers is therefore essential to promote their well-being and prevent caregiver burden.
O4.2.2 Informal caregiving and its impact on health over time
Fiona Alpass, Agnes
Szabo, Allen Joanne, Christine Stephens
Massey University, New Zealand
Background: The dominant discourse is that providing care is detrimental over time to the caregiver’s health and wellbeing – the ‘wear and tear’ hypothesis. Recently the support for the long-term health effects of caregiving has been questioned. This paper investigates the impact of informal caregiving on the mental and physical health of older caregivers over time.
Methods: Data were collected in 2006, 2008, 2010, 2012, 2014 and 2016 from a sample of older New Zealanders (51% female) aged between 55 and 70 at baseline as part of the Health, Work, and Retirement study. We investigated changes in the mental and physical health of older caregivers over a 10-year period. Differences between patterns of caregiving were also examined.
Results: Of participants (N=2,346), 16.6% were caregivers and 83.4% never provided care. Females were more likely to be caregivers. Mental health increased slightly over time for all participants but there was no difference in trajectory change based on carer status except for those who stopped caring. No significant differences in physical health or differences in trajectory change for physical health across time based on caregiver status were found.
Conclusions: The wear and tear hypothesis for the effects of caregiving over time was not supported. Findings provide some support for a health selection bias into caring and the adaptation hypothesis of caring across time.
O4.2.3 Who experienced more caregiving burden: spousal caregivers or offspring caregivers?
Alice Ming-Lin Chong,
City University of Hong Kong
Background: The present study examined whether there were any differences in perceived impacts of taking care of frail elders between Chinese spousal and offspring caregivers.
Methods: The family caregivers were purposively selected and interviewed with the Zarit Burden Interview and items addressing the impacts of care provision. A total of 34 (40%) spousal caregivers of mean aged 70.87 (SD = 9.82) and 51 (60%) offspring caregivers of mean aged 55.46 (SD = 7.70) participated.
Research results: The majority (94.12%) of caregivers reported challenges in care-giving. Results of independent t-tests showed that spousal caregivers experienced much more dependency of care receivers (t = 2.12, p < 0.05) and less inadequacy in the caring process, compared to offspring caregivers (t = 3.59, p < 0.01). Compared to spousal caregivers, offspring caregivers reported more difficulties in providing care in timely manner (χ2 = 11.10, p ≤ .001), and having to take up other caring responsibility (χ2 = 11.75, p ≤ .001). Despite of burden experienced by caregivers, there were also some positive gains to them. Taking up the care-giving responsibility, most caregivers had felt being needed, useful, and loved. Compared to spousal caregivers, more offspring caregivers found that their relationship with the elderly family member had been improved (χ2 = 11.10, p < .01).
Conclusions: The study suggests that, in comparison to the spousal caregivers, offspring caregivers tended to experience more difficulties in care-giving, on the other hand, they also experienced more gains in care provision.
O4.2.4 The moderating role of social networks for caregivers´ well-being
Max Planck Institute for Social Law and Social Policy, Germany
Family caregiving is an indispensable task in an aging society, but it can be a burdensome experience for caregivers. The individual burden of caregiving not only depends on care characteristics but is also related to contextual factors such as the caregivers’ social network. This study adds to the question if and how social networks change through the uptake of caregiving and whether social networks help to ease the negative consequences of caregiving.
We use data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from around 13,000 Europeans and 900 spousal caregivers located in 14 countries using fixed effects models and OLS regression. The data is taken from 2011 and 2015, which is before and after caregiving has started.
First results show that spousal caregivers’ well-being, measured in terms of life satisfaction, loneliness, and depression is positively linked to caregivers´ well-being. Contrary to earlier research, we find that social networks grow in size and mean emotional closeness and that the people named live further away. Furthermore, social networks only seem to play a limited role in the moderation of caregiver well-being.
Our tentative results suggest that social networks become intensified through caregiving, presumably because there is a higher need for social support. Caregiver well-being is only sparsely affected by social network characteristics. We assume that the sorrow that is associated with the care-dependency of the partner (irrespective of caregiving tasks) masks the positive effects of social networks.
O4.2.5 Capabilities of older informal care recipients across time
Sarah Åkerman1, Fredrica Nyqvist1, Minna Zechner2, Mikael Nygård1
1 Åbo Akademi University, Finland, 2 Seinäjoki University of Applied Sciences, Finland
Care policies in Finland are changing. There is an increasing emphasis on ageing in place and care provided by next of kin, in other words informal care. While care policies are in flux, the structural context of informal care is also changing. In Finland, informal care is turned into an integrated part of the social and health care chain with official agreements with municipalities. The agreements support informal caregivers in their work, while they at the same time blur the lines and responsibilities between informal and formal actors. We study the consequences of this policy by looking at seven older care dependents across time.
This qualitative longitudinal study seeks to find out, by looking at the same informal care recipients at two different time points, the changes and continuities in capabilities to live a good life in informal care across time. Seven older informal care recipients have been interviewed in 2015 and 2017 using a semi-structured procedure.
The preliminary results illustrate how the capabilities of informal care recipients evolve across time and are affected by changes in health status, relationship with the caregiver and policy. Capability is here understood as the opportunity to live a good life as a result of individual resources and structural factors.
By following the care recipients across time, our study provides important in-depth knowledge on the challenges and benefits that informal care may entail.
O4.2.6 Still waiting for recognition and support: challenges faced by older people caring
for a partner.
Liz Lloyd, Patricia Jessiman
University of Bristol, UK
Background: In the UK, over half a million persons over 65 years provide care for another person, and this figure is set to increase. The 2014 Care Act was intended to promote recognition of unpaid carers in the care system and give them access services and support, This study examines the impact of this Act on older carers who provide unpaid, co-resident care to a partner.
Methods: Four local authorities in England were selected as case studies. In each, a documentary review was undertaken, and qualitative interviews with senior managers, specialist carer support workers, local carers’ organisations and practitioners responsible for statutory assessments of carers’ needs. In addition, three observations of assessments of older carers were undertaken in each area.
Research Results: Severe financial constraints in the social care system have led to gross inadequacies in support and restricted access to services. Older carers are faced with particular barriers. These include lack of recognition by social care staff that an older person is a carer and not simply a spouse (sometimes reflected in older carers’ own perceptions); getting access to appropriate support and navigating complex statutory systems; recognition of the diverse impacts of caring, including on personal relationships, finances and health.
Conclusions: The study sheds light on the gap between the principles of wellbeing and preventative support enshrined in the Care Act and the reality faced by front-line social care staff and older carers.