Mantelzorg en dementie: Paradigm shifts in Support for Dementia Care: ‘The Journey of my life’: destination unknown

Garritsen, Marcel (2021) Mantelzorg en dementie: Paradigm shifts in Support for Dementia Care: ‘The Journey of my life’: destination unknown. Doctoral thesis, Birmingham City University.

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Abstract

Introduction and background: This study is set in the Netherlands, and focused on dementia care in the community. Without exception, caring for a loved one with dementia in their own home is difficult and has a major impact on the carers own lives. Health and social care resources tend to focus on the patient with limited support for the informal carer, without whom the patient would be in full-time professional care. In addition the number of people with dementia in the western world is rising and will increase significantly in the coming years, with an accompanying rise in family and/or informal carers. There was limited information on the needs and wants of this crucial, and largely unrecognised group, a situation that needs to change if they are to continue to care for their loved ones in their own home. These factors were the rationale and motivation behind this study.

Aims: To gain insight into the motives, the needs and wishes of family/informal carers, caring for a loved one with dementia. To use this data to develop a conceptual framework and model that has the family unit as central and to make recommendations for policy and practice for Dementia care in the Netherlands.

Methods: This was a qualitative study, which used grounded theory to explore the lived experience of informal carers in the east of the Netherlands. Ethics approval was gained for the study. Participants were randomly selected from the data base of a care organisation supporting dementia patients in the community. A total of 25 individual interviews were carried out followed by focus groups of between 6-9 participants. In total 72 informal carers participated in the study. As recommended in grounded theory, data collection and analysis took place concurrently, with data collection ceasing once saturation was reached.

Findings: It was evident from the start of the study that the carers wanted to care for their loved one, but were struggling. They described caring as a ‘heavy burden’ and reported feeling ignored and personally let down by professionals. They wanted to be respected partners in care and be given the lead in setting up care plans, arguing that the care offered was not tailor-made for the patient, but designed to suited the professional organisations with the patient expected to ‘fit in’. They desperately needed time for themselves, and emotional support, but felt selfish and guilty for thinking about themselves, with most reported that as the caring burden increased, so they had ‘lost their own lives’ a situation that urgently needs addressing if they are to continue in their chosen role.

The study revealed that for this group a major paradigm shift in care planning was needed with the family unit and the informal carer’s role within it, given primacy over professional services. Currently the converse is found, with professionals seeing it as their role to define and order care services. The paradigm shift means that professional care becomes regarded as supplementary to, and not more important than, the role of informal carers and the care they provide.

Conclusions: The wealth of data was used to develop a model to empower informal carers, to help them recognise their own needs as well as those of their loved one, to give them the confidence to enable them to access support for themselves, and to take the lead in planning care and service delivery. The project also developed a series of individual activities that have gained national recognition and acceptance, these include a young carers project, an information video and package that gives information across the whole journey for the family unit, a training package for professionals, and regular Alzheimers cafes to support both informal carer and their loved one. However, the greatest outcome of this study is that the model and paradigm shift have been accepted for implementation on a national basis. This will begin in 2021, having been delayed a year by the COVID-19 pandemic.

Item Type: Thesis (Doctoral)
Dates:
DateEvent
29 September 2020Submitted
3 February 2021Accepted
Uncontrolled Keywords: Dementia, carers, support for carers
Subjects: CAH02 - subjects allied to medicine > CAH02-06 - allied health > CAH02-06-01 - health sciences (non-specific)
Divisions: Doctoral Research College > Doctoral Theses Collection
Faculty of Health, Education and Life Sciences > School of Health Sciences
Depositing User: Jaycie Carter
Date Deposited: 27 Jul 2022 12:58
Last Modified: 27 Jul 2022 12:58
URI: http://www.open-access.bcu.ac.uk/id/eprint/13443

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