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To develop a grounded theory that explains how formal care service providers experience caring for and supporting persons with early-onset dementia (EOD).
A grounded theory approach.
Thirty formal care service providers of persons with EOD were recruited from community-based dementia care facilities in northern and central Taiwan from August 2021 and February 2022 using purposive and theoretical sampling. Transcribed face-to-face, semi-structured interview data were analysed with constant comparative analysis. A theoretical framework was constructed from the data to describe the experience of being a formal care service provider for persons with EOD.
The core category of ‘client-as-partner care’ was the theoretical framework that explained the experience of formal care service providers and described how participants met the needs of persons with EOD. Five categories described the components of the process: (1) identifying clients' characteristics; (2) establishing a personal relationship; (3) enhancing self-esteem; (4) maintaining dignity; and (5) the influence of family members and community members. The first four categories were interactive and key to delivering client-as-partner care; the fifth category could alter any key component and reduce or improve the quality of care. Reflections shared by participants offered a window into the outcomes of successful client-as-partner care: quality of life improved for clients and job satisfaction increased for providers.
The client-as-partner care model for persons with EOD required knowledge of the client's unique characteristics, a strong provider-client relationship, offering strategies tailored to the client's abilities and interests, and fostering independence.
Client-as-partner care provides a person-centred approach that enhances support quality for persons with EOD and increases job satisfaction for formal care providers. Successful strategies can inform case management, strengthen support for this population and indirectly improve family caregivers' competencies.
No patient or public contribution.
COREQ (COnsolidated criteria for REporting Qualitative research).
Early-onset dementia, also referred to as young-onset dementia, affects people younger than 65 years of age. A diagnosis of dementia is often not considered when patients with symptoms of cognitive decline are < 65 years old, often resulting in a delayed diagnosis. Therefore, family caregiving for persons with early-onset dementia may differ from caregiving for persons with other dementias.
To explain the caregiving trajectory for new family caregivers of persons with early-onset dementia before and after diagnosis of the disease.
This qualitative study was conducted from a grounded theory perspective.
Family caregivers of persons recently diagnosed with early-onset dementia were recruited from two medical centres in northern Taiwan by a combination of purposive and theoretical sampling to inform the theory explaining the caregiving trajectory. Data were collected with face-to-face semi-structured interviews. Interview data were analysed with constant comparative analysis; data collection and analysis ceased when theoretical saturation was reached. A total of 15 family caregivers were interviewed.
The core theme describing the trajectory of the caregiving process for new family caregivers of persons recently diagnosed with early-onset dementia was maintaining a dynamic balance, which involved three interacting elements: (1) emotional reactions, (2) multitasking and facing conflicts, and (3) continual adjustments. A diagnosis helped caregivers find a temporary balance, but when disease progression increased, new adjustments were required.
Maintaining dynamic balance allowed caregivers to cope with their emotions, juggle the responsibilities associated with their new role, and adjust to the progression of dementia.
The findings describe the process of maintaining a dynamic balance for family caregivers of a spouse or parent with early-onset dementia. The elements used to achieve caregiving balance could help mental healthcare nurses educate family caregivers on how to adjust communication and provide them with information on when more practical support is needed.
No Patient or public contribution.
COREQ (COnsolidated criteria for REporting Qualitative research).
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