Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times.
Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition.
Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic.
Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.
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http://dx.doi.org/10.3390/ijerph18020686 | DOI Listing |
J Autism Dev Disord
December 2024
Catalight Research Institute, Walnut Creek, CA, US.
Parental stress can be debilitating for parents and their families. This is particularly true for parents who have a child with autism spectrum disorder (ASD) or other intellectual and developmental disability (I/DD). Effective screening and measurement of parental stress leads to accurate and effective intervention.
View Article and Find Full Text PDFAnn Med
December 2025
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.
Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.
J Res Adolesc
March 2025
Virginia Commonwealth University, Richmond, Virginia, USA.
The current study examined whether adverse childhood experiences and racial discrimination predicted adolescents' internal developmental assets, external developmental assets, and depressive symptoms. We also tested whether these relations were buffered by aspects of caregivers' reports of ethnic-racial socialization efforts (i.e.
View Article and Find Full Text PDFOrphanet J Rare Dis
December 2024
Department of Medical Genetics, Telemark Hospital Trust, Skien, Norway.
Background: Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous diseases characterized by skin fragility and blistering. EB is incurable, and treatment consists of preventing blisters in addition to painful and time consuming skin care, often performed by the parents, in addition to monitoring other symptoms in cases of severe EB.
Results: The purpose of this study was to explore parental experiences of caring for a child with EB.
Eur J Oncol Nurs
November 2024
University of Western Australia, China. Electronic address:
Purpose: To investigate the impacts of psychoeducational interventions in adjusting the physical and psychological statuses of caregivers of CRC patients.
Methods: Nine electronic databases, including Medline, Web of Science, Embase, Cochrane Library, CINAHL Complete, CNKI, Wan Fang Database, VIP Database, and CBM, were searched to identify eligible randomized controlled trials from January 2000 to July 2023. From 1498 articles, 9 articles that met the inclusion criteria were identified and systematically analyzed.
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