Investigating kinship care in dementia: an ethnography of families in Andalucia
Lead Research Organisation:
University of Sussex
Department Name: Sch of Global Studies
Abstract
This research will critically investigate dementia care within families in Andalucia, Spain. Dementia has spiralled into a world health crisis, with a demographically ageing global population, the World Health Organization is urging governments to prioritise dementia healthcare strategies (WHO 2012). Thus cross-cultural investigation into how people care for those affected by dementia is crucial and timely in contributing to an international body of knowledge that can influence effective and culturally-informed dementia health and social care policy.
Around the world people caring for their family with dementia at home remains the norm, yet increasingly 'western' countries are placing those with dementia in long-term care institutions. Intercountry variation of institutionalisation factors has been evidenced, yet there remains an 'urgent need' to investigate these differing cultural factors (Verbeek et al 2015). Spain has the eleventh highest rate of dementia, yet the institutionalisation rate remains low, with most people with dementia in Spain living with their families (Rivera et al 2008). Spain thus provides an intriguing context to investigate dementia care, as despite its 'western' status, rooted within advanced processes of economy, politics, media and echnology, people are adapting care-giving into long-established patterns of family life. Andalucia, a region embedded with strong kinship networks, forms a useful case study to explore how family structure, public health and dementia care interplay, contributing to global debates on dementia care. This research thus will use the local cultural context of Andalucia to answer the following wider questions regarding kinship and dementia care:
- What strategies of dementia care are emerging through kinship relations, and why?
- How are families experiencing caring for relatives with dementia, and in what ways is dementia care re-shaping modern kinship and care-giving culture?
Anthropologists have critiqued a tendency of existing dementia research to investigate through a biomedical viewpoint that overshadows experience. Critical anthropological theories consider the physical body as a site of power on which social meanings are negotiated. Kontos (2005) thus critiques research into dementia care as being based on a model of dementia that denies the 'agential role' of the body in creating 'embodied selfhood', and thus advocates ethnographic investigation of bodily experience in dementia. Thus, I aim to expand on such works by investigating the embodied everyday experience of dementia care-giving within Andalucian families.
This research will thus use ethnography to investigate the experiences of dementia care in Andalucian families, exploring the cultural values that underpin its everyday practice. Exploring dementia care in the private sphere of the family home provides an interesting site of investigation into how public biomedical discourses around dementia are negotiated in private family contexts. I will stay with the families, conducting extensive participant-observation over twelve-months, to get to know the families, their stories, and everyday care-giving experiences on a deep level to uncover the everyday practice of caring for a relative with dementia in the family home.
Thus, through ethnographic exploration of this local context, I will address wider questions concerning how dementia is re-shaping kinship relations and care-giving cultures in the 21st-century. Thus, this research will have invaluable application in contributing to an urgently needed cross-cultural knowledge base to help deliver effective, and culturally-informed dementia health and social care policy worldwide.
Around the world people caring for their family with dementia at home remains the norm, yet increasingly 'western' countries are placing those with dementia in long-term care institutions. Intercountry variation of institutionalisation factors has been evidenced, yet there remains an 'urgent need' to investigate these differing cultural factors (Verbeek et al 2015). Spain has the eleventh highest rate of dementia, yet the institutionalisation rate remains low, with most people with dementia in Spain living with their families (Rivera et al 2008). Spain thus provides an intriguing context to investigate dementia care, as despite its 'western' status, rooted within advanced processes of economy, politics, media and echnology, people are adapting care-giving into long-established patterns of family life. Andalucia, a region embedded with strong kinship networks, forms a useful case study to explore how family structure, public health and dementia care interplay, contributing to global debates on dementia care. This research thus will use the local cultural context of Andalucia to answer the following wider questions regarding kinship and dementia care:
- What strategies of dementia care are emerging through kinship relations, and why?
- How are families experiencing caring for relatives with dementia, and in what ways is dementia care re-shaping modern kinship and care-giving culture?
Anthropologists have critiqued a tendency of existing dementia research to investigate through a biomedical viewpoint that overshadows experience. Critical anthropological theories consider the physical body as a site of power on which social meanings are negotiated. Kontos (2005) thus critiques research into dementia care as being based on a model of dementia that denies the 'agential role' of the body in creating 'embodied selfhood', and thus advocates ethnographic investigation of bodily experience in dementia. Thus, I aim to expand on such works by investigating the embodied everyday experience of dementia care-giving within Andalucian families.
This research will thus use ethnography to investigate the experiences of dementia care in Andalucian families, exploring the cultural values that underpin its everyday practice. Exploring dementia care in the private sphere of the family home provides an interesting site of investigation into how public biomedical discourses around dementia are negotiated in private family contexts. I will stay with the families, conducting extensive participant-observation over twelve-months, to get to know the families, their stories, and everyday care-giving experiences on a deep level to uncover the everyday practice of caring for a relative with dementia in the family home.
Thus, through ethnographic exploration of this local context, I will address wider questions concerning how dementia is re-shaping kinship relations and care-giving cultures in the 21st-century. Thus, this research will have invaluable application in contributing to an urgently needed cross-cultural knowledge base to help deliver effective, and culturally-informed dementia health and social care policy worldwide.
Organisations
People |
ORCID iD |
| Chloe Place (Student) |
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P00072X/1 | 01/10/2017 | 30/09/2027 | |||
| 1935861 | Studentship | ES/P00072X/1 | 01/10/2017 | 01/03/2022 | Chloe Place |
| Description | This funded PhD is still in progress (two years from completion) but some initial findings are emerging: - Initial findings demonstrate how cultural context greatly influences the way dementia care is experienced by both care-givers and care-receivers through the example of this ethnography of dementia care in Andalusia. - The Andalusian approach to dementia care remains largely family-based, most people caring for those with dementia do so at home. This is particularly the case in pueblos (small towns/villages) in Andalusia. However, this family approach to dementia care is transforming rapidly as more people turn to public healthcare sites for dementia care, such as day centres and care homes. - Current public social care provisions for dementia in Andalusia are not meeting the demand for services. The Dependency Law, aimed at installing social care to dependent persons with dementia is being employed, but remains insufficient in meeting the increasing demand for elder care, with long waiting lists for care, and minimal levels of social care available. Many report people with dementia dying before social care packages are put in place. - An attitude of distrust still prevails from families towards outside sources of elder and dementia care, particularly those provided by the state. Many families still feel strongly against using public and institutional forms of dementia and elder care (e.g. care homes). Many people still assume the state provided care to be ineffective and this assumption can mean families who are eligible for state social care do not apply for care or apply too late. This reluctance could be due to Andalusia's local history of state violence and oppression during Franco's dictatorship meaning a distrust of the state still prevails and a strong reliance on the family network remains. - A common approach to dementia care in Andalusia is the use of rotational systems of care between siblings to ensure the family member with dementia can remain at home. This is done either through siblings taking it in turns to spend extended periods (e.g. between one to three months) living with the person with dementia, or moving the person with dementia between the homes of the siblings to ensure they receive care. These rotational care systems can reduce carer burden and stress, and enhance wellbeing of the person with dementia who is cared for by family-members in familiar environment(s), but it can negatively affect dementia symptoms as the person with dementia has to continually readjust to a changing environment. - In Andalusia dementia care within families is largely the responsibility of female family-members (daughters/daughters-in-law/wives/nieces/sisters), or away from the family by low paid carers, may of whom are migrants working under poor conditions, often illegally. Thus, the conceptualisation of dementia care remains gendered and racialised. - The presence of regular annual community rituals (e.g. carnivals, religious processions, town fare celebrations) in Andalusia are used to enhance the quality of dementia care. Many public healthcare sites, such as day centres and care homes, actively encourage service-users with dementia to participate in community rituals which can help orientate service-users with dementia to time and place and reduce the impact of social isolation from institutionalisation, enabling service-users with dementia to retain their sense of belonging to the community, and thus enhancing wellbeing. - The presence of active local media stations in Andalusian pueblos (towns/villages) enables many dependent older people to retain their connection and sense of belonging to the community even when symptoms of their illness may limit their ability to access the community or means they are house-bound, thus enhancing wellbeing. - Cognitive therapies aimed at reducing the symptoms of dementia to service-users with dementia used in public healthcare sites in Andalusia, can inadvertently cause anxiety and stress to service-users with dementia due to their lack of cultural appropriateness. Many older service-users with dementia in Andalusia are illiterate and being made to engage in written or computer based cognitive activities can be anxiety provoking as they are not used to such types of activities. |
| Exploitation Route | It is still too early to give concrete application to this funded project. However, the outcomes should be useful to informing the global knowledge-base of dementia care strategies and towards understanding how local cultures/contexts impact the way dementia care is experienced. |
| Sectors | Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Environment,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
| URL | https://www.theguardian.com/education/2019/apr/05/its-about-how-people-can-better-their-lives-students-on-why-phds-matter |
| Description | Some initial findings were communicated in The Guardian newspaper to inform the general public about how cross-cultural social science research into ageing and dementia can enhance our understandings of global approaches to elder care. |
| First Year Of Impact | 2019 |
| Sector | Communities and Social Services/Policy,Education,Healthcare,Culture, Heritage, Museums and Collections |
| Impact Types | Societal |