Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs.
3 May 2023 in International Journal of Geriatric Psychiatry
Objectives: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied.Methods: A cross‐sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi‐square tests.Results: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one‐third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support.Conclusions: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.
ObjectivesThe aim is to assess the level of stigmatization and knowledge of dementia among university students of medical, rehabilitation and social faculties in Poland. Possible correlates of these concepts and group differences are also investigated.MethodsWe applied quantitative methods using an online questionnaire comprising sociodemographics, the Alzheimer's Disease Knowledge Scale, a vignette of a person with dementia and the modified Family Stigma in Alzheimer's Disease Scale.ResultsStudents had low levels of dementia knowledge and moderate levels of stigma. Medical science students had significantly better knowledge than the other groups but did not differ in their level of stigma. Relationships between the main variables were complex. Emotional and cognitive stigmatizing attributions were negatively correlated with knowledge about communication and behaviors of people with dementia. Better knowledge on causes and characteristics, as well as on risks and health promotion of the disease also triggered fewer negative attributions toward people with dementia.ConclusionsIf health-related programs are to be effective, they should provide opportunities for the acquisition of relevant knowledge and skills that also address the stigmatization of people living with dementia. Well-established biomedical knowledge on dementia must be supplemented with a person-centered approach and proper communication skills.
ObjectivesThis explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland.MethodQualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers.ResultsTwenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences.ConclusionAcross countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.