Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.
Personalisation of social care for adults is a key policy objective in the United Kingdom (UK), as in many other welfare states, having gained wide acceptance as essential for the empowerment of service users and as a means of managing increasing population demand. The system of personal budgets being established in the UK pursues twin objectives: aiming to ‘empower’ individuals to achieve ‘more for less’. However, there is mixed evidence that either objective is being achieved in practice. This is especially so in respect of older people who are less likely to accept a personal budget and more likely to be dissatisfied with their experience of using one. A qualitative study of eight cases in two local authority areas in England explored older people's experience of using a personal budget taken in the form of a direct payment. Data were elicited through a series of three in-depth interviews with each participant. The study was concerned with understanding the relationship between participants' experience of ‘Self’ and personalised services. Participants experienced personalisation when paid carers perceived and accommodated their ‘special requirements of Self’. In most cases this was achieved despite the consumerist aspects of personalisation rather than because of them, and often gave rise to risk and dilemma. The findings emphasise the importance of holistic assessment, and commissioning for quality over maximising choice.
Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the well-being and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May-June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.
The Care Act 2014 provides for ‘parity of esteem’ between people with social care needs and carers. This is achieved by extending the principles of prevention and wellbeing to carers; reinforcing carers’ right to an assessment; and setting national eligibility criteria for access to carer support services. This article reports on research that examined the impact of these changes on older co-resident carers of older people in four English local authorities. Findings are described in relation to four key themes: organisational arrangements and rationale; the aims of carer support and preventative services; design and delivery of carer assessment; and barriers to assessment and support. The findings of the research suggest that, despite the new statutory requirements, underlying contradictions and tensions in local authorities’ relationship with carers, and efforts to support them, remain unresolved.
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