'They simply do not understand'
| Autor: | Kirsten Peetoom, Jeroen Bruinsma, Frans R.J. Verhey, Lizzy M. M. Boots, Marjolein E. de Vugt, Christian Bakker |
|---|---|
| Přispěvatelé: | Psychiatrie & Neuropsychologie, RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, MUMC+: MA Niet Med Staf Psychologie (9), MUMC+: MA Med Staf Spec Psychiatrie (9) |
| Jazyk: | angličtina |
| Rok vydání: | 2022 |
| Předmět: |
medicine.medical_specialty
2019-20 coronavirus outbreak caregivers IMPACT DIAGNOSIS NEEDS Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] 03 medical and health sciences 0302 clinical medicine YOUNG-ONSET DEMENTIA mental disorders medicine loneliness Humans BEHAVIORAL VARIANT EPIDEMIOLOGY Family LOBAR DEGENERATION Psychiatry Spouses Qualitative Research lived experiences 030214 geriatrics Family caregivers Lived experience nutritional and metabolic diseases Loneliness Focus Groups medicine.disease Focus group nervous system diseases Psychiatry and Mental health PERSPECTIVES Spouse SOCIAL COGNITION Geriatrics and Gerontology Pshychiatric Mental Health medicine.symptom Psychology BURDEN Gerontology Healthcare providers 030217 neurology & neurosurgery Frontotemporal dementia |
| Zdroj: | Aging & Mental Health, 26, 2, pp. 277-285 Aging & Mental Health, 26, 277-285 Aging & Mental Health, 26(2), 277-285. Routledge/Taylor & Francis Group |
| ISSN: | 1364-6915 1360-7863 |
| Popis: | Contains fulltext : 249066.pdf (Publisher’s version ) (Open Access) BACKGROUND: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. METHODS: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding. RESULTS: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role. CONCLUSION: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers. |
| Databáze: | OpenAIRE |
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