Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

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.

Understanding of Dementia in the Polish Language: A Frame Semantic Approach.

BACKGROUND: With the increasing incidences of dementia in aging societies, attention should be paid to the social context in which people with dementia live. One of its aspects is language transmitting beliefs, perceptions, and behavioral patterns. An analysis of understanding the diagnostic label of dementia may reveal the role of semantics in the process of social cognition of this disease. OBJECTIVE: The overall aim of this study was to investigate the understanding of the word dementia (otepienie) in the Polish language. METHODS: Frame semantics approach was applied. The structure of semantic information was uncovered with the concept of frame utilizing The National Corpus of Polish (the biggest corpus of contemporary Polish language of 1,500 million words). Additional data was collected from Polish speaking adults in Poland. RESULTS: The analyses allowed to identify the otepienie frame for Polish and verify how its elements are filled in by the general population, indicating the selectivity of colloquial knowledge about dementia. Dementia deviates from the prototypical disease. Need to care for the person with dementia outweighs treatment options. The cognitive symptoms and characteristics of the subject are salient. The perceptions of people with dementia embedded in semantics of the diagnostic label might create a basis for prejudicial attitudes among lay part of the society. CONCLUSION: Findings give foundation to further studies on relationship between semantics and social cognition of dementia which has a real impact on the social and clinical situation of people with dementia and may facilitate formulation of tailored messages aimed at building dementia-friendly society.

Use of technology by people with dementia and informal carers during COVID-19: A cross-country comparison.

OBJECTIVES: Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. METHODS: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. RESULTS: Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. CONCLUSIONS: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.

A qualitative 5-country comparison of the perceived impacts of COVID-19 on people living with dementia and unpaid carers.

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. METHODS: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. RESULTS: Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic-A Qualitative Study.

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.