Understanding the experiences of people with dementia and their family carers participating in healthcare student dementia education: A mixed-methods evaluation from the time for dementia programme.

BACKGROUND: There is increasing awareness of the potential for positive impacts on student learning from involving people with dementia and family carers within undergraduate teaching. However, research on the experience of people with dementia and their family carers is sparse. This study aimed to evaluate the satisfaction and views of families (people with dementia and their family carers) who volunteered in Time for Dementia (TFD); an educational programme where undergraduate healthcare students visit families at home over a 2-year period. METHODS: Families taking part in TFD completed a satisfaction survey after taking part in the programme (n = 803). Frequencies of satisfaction survey items were summarised and multiple linear regression models for factors associated with total satisfaction scores were produced. Open text responses were analysed using thematic framework analysis as to the most favourable aspects of the programme and areas requiring improvement. RESULTS: Overall satisfaction was high for taking part in TFD, with a perception of contribution, and being of value. There was strong evidence that families enjoyed the experience and would recommend participation to others. Higher numbers of student visits were significantly associated with greater satisfaction. Families identified aspects of the programme that benefited them, with social interaction rating highly. Improvements suggested by the families included increased visit structure and organisational improvements. CONCLUSIONS: This study has sought to evaluate at scale the satisfaction of families taking part in a dementia education programme. It is positive that families report high satisfaction in the programme and identify perceived value for themselves as well as students, suggesting reciprocal benefits. This study contributes to the broader understanding of what Experts by Experience value when taking part in educational interventions.

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

OBJECTIVES: The COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers. DESIGN: Our mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia. SETTING: The study took place in the South-East of England. PARTICIPANTS: Existing study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations. MEASUREMENT: Interviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis. RESULTS: 16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns. CONCLUSIONS: Our study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.

Covid-19 and the quality of life of people with dementia and their carers-The TFD-C19 study.

INTRODUCTION: COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study. METHODS: We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer. RESULTS: 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers. DISCUSSION: It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.