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The needs of informal carers of people living with dementia: a qualitative study

Publication |
2021

Abstract

Background: The ageing population requires the higher attention to challenges in providing care for frail older people including people living with dementia. The most of these people prefer to live independently in their home environment. In ensuring such opportunity family and other informal carers play a central role. Therefore, their needs and experiences have to be well explored in order to provide tailored support and care. The main aim of poster presentation is to provide evidence of the wide range of needs and experiences of family carers of home dwelling people living with dementia. Methodology: A qualitative research method was chosen. Data was collected by means of semi-structured interviews with family carers providing informal care of person living with dementia. The thematic analysis process involved several steps that were continuously discussed by the team of all authors. Based on the thematic analysis, nine sub-themes were identified and then grouped into four main themes based on their similarity. Results: The main themes were:

1) Information and Services,

2) Safety,

3) Integrity and

4) Personal Time. None of the family carers interviewed in this study expressed the intention to place their loved one in a residential facility in their current stage of dementia. However, all carers formulated their need for help with actual caregiving in various areas to ensure the person living with dementia will be able to stay at home. Sufficient access to information and services, ensuring safety of relative with dementia, supporting their integrity and sufficient free time for themselves were identified as key factors in coping with care. Discussion: The needs and experiences of informal carers of people living with dementia need to be carefully ascertained. Ensuring appropriate support for informal carers, based on their experience of providing care, is essential to minimise caregiver burden and leads to a better quality of life for carers and those they care for. This study was supported by the Grant Agency of Charles University, project n. 760219 (Met and unmet needs of particularly vulnerable older patients in home health care and hospital care)