COVID-19 resources on Dementia

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‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

Age and Ageing

People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

Last updated on hub: 26 May 2021

“Advocating every single day” so as not to be forgotten: factors supporting resiliency in adult day service centers amidst COVID-19-related closures

Journal of Gerontological Social Work

Adult day centers (ADCs) are nonresidential settings that support the health and social needs of vulnerable older adults. Due to ADCs’ congregate nature and participants’ compromised health status, many ADCs have been forced to close during the COVID-19 pandemic. It is unknown how closures have impacted service delivery at ADCs. Guided by the Resiliency Activation Framework, we (a) identified consequences resulting from closures of ADCs during the COVID-19 pandemic and (b) described factors that have enabled the ADC community to remain resilient in the wake of challenges brought on by the pandemic. We conducted 2 focus groups in California (n = 12), and individual interviews with ADC staff members (n = 8) in 7 other states. The results of a directed content analysis revealed perceived declines in physical, cognitive, and mental health of ADC users and increased caregiver strain. Access to human, social, economic, and political capital were essential for supporting ADCs in buffering the impacts of the pandemic on the older adults they serve but were not consistently available. Research is urgently needed that quantifies the impacts of the pandemic on ADC users and their caregivers to inform policy and advocacy efforts in the wake of the pandemic.

Last updated on hub: 19 May 2021

“Because if I don’t hold his hand then I might as well not be there”: experiences of Dutch and UK care home visiting during the COVID-19 pandemic

International Psychogeriatrics

Objectives:: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies. Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analysed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

Last updated on hub: 07 March 2022

A dose of music with your COVID-19 vaccination

Music for Dementia

Guidance for individuals, carers and health professionals on how to use music to lessen people’s anxiety and distress when being vaccinated. Vaccinations can cause anxiety and agitation especially for those with an impairment, disability or condition e.g. dementia. Waiting or an unfamiliar journey can exacerbate disorientation and anxiety. While music can’t eliminate any physical pain, it can help manage the experience and physiological symptoms, leading to a more pleasant experience. Research has shown music can lessen distress by almost half when used during vaccination programmes, and almost double the level of coping behaviour. It can be a powerful distraction from pain.

Last updated on hub: 10 March 2021

A musical guide for people with dementia and their carers during Covid-19

Music for Dementia

Music has huge benefits for people with dementia and those caring for them. It helps reduce agitation, depression and anxiety, alongside improving general health and wellbeing. This practical musical guide offers ideas on how to use music during Covid-19. These include: Have a musical conversation via a phone or video call; playing favourite CDs, vinyl or old mix tapes; listening to a radio show; watching live music in the comfort of one’s own home; watching a musical movie; experiencing a virtual music event; making a playlist; streaming music; getting children involved; finding out what others used to listen to; finding songs by lyrics; creating a musical quiz; learning an instrument.

Last updated on hub: 10 March 2021

A piece of paper is not the same as having someone to talk to”: accessing post-diagnostic dementia care before and since COVID-10 and associated inequalities

International Journal for Equity in Health

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

Last updated on hub: 29 October 2021

A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers

International Journal of Geriatric Psychiatry

Objectives: The aim of this national survey was to explore the impact of COVID‐19 public health measures on access to social support services and the effects of closures of services on the mental well‐being of older people and those affected by dementia. Methods: A UK‐wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID‐19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well‐being. Results: Five hundred and sixty‐nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t‐tests and X2‐tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID‐19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well‐being in unpaid carers and older adults. Conclusions: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Last updated on hub: 24 February 2021

A unique disaster response in aged residential dementia care: Can the experience inform future care models?

Journal of Clinical Nursing

Aims and Objectives: To understand how staff who chose to live-in with residents in a level 3 dementia care unit perceived the experience, in particular, their perceptions of how residing on site affected resident well-being. Background: COVID-19 has been especially devastating in aged residential care (ARC) facilities. In March 2020, when the threat became realised in New Zealand, one residential dementia care facility implemented a unique response to the imminent threat of COVID-19. Eight staff members made the decision to live on site during the lockdown, ensuring residents’ risk of contracting the virus was significantly reduced as carers would not go outside of the facility. Design: A qualitative descriptive inquiry. Methods: Seven staff who chose to live-in, and the facility manager, participated in semi-structured, face-to-face interviews at the ARC. Audio-recorded interviews were transcribed verbatim and analysed using a thematic analysis approach. COREQ guidelines were adhered to in the reporting of this study. Results: An overarching motif which emerged from the findings was the articulation of an ‘all in this together’ attitude which fostered feelings of camaraderie and collaboration which enhanced the experience for staff individually, and as a group. Themes identified were as follows: (a) A ‘safe’ but challenging choice, (b) Benefits for the staff and (c) Positive outcomes for the residents. Conclusion: This crisis inadvertently brought about an enhanced ‘dementia-friendly’, person-centred communal environment. Relevance to clinical practice: This study identified themes that deepen our understanding of caring for vulnerable populations during a pandemic and beyond. Given the success of this ‘live-in’ innovation, consideration must be given to applying these findings more generally when planning care models for best outcomes for residents receiving rest home level dementia care. How we care for people in disaster situations reflects the heart of the caring workforce, but such innovation may be extended to usual care where indicated.

Last updated on hub: 02 July 2021

Achieving safe, effective, and compassionate quarantine or isolation of older adults with dementia in nursing homes

American Journal of Geriatric Psychiatry

Nursing homes are facing the rapid spread of COVID-19 among residents and staff and are at the centre of the public health emergency due to the COVID-19 pandemic. As policy changes and interventions designed to support nursing homes are put into place, there are barriers to implementing a fundamental, highly effective element of infection control, namely the isolation of suspected or confirmed cases. Many nursing home residents have dementia, associated with impairments in memory, language, insight, and judgment that impact their ability to understand and appreciate the necessity of isolation and to voluntarily comply with isolation procedures. While there is a clear ethical and legal basis for the involuntary confinement of people with dementia, the potential for unintended harm with these interventions is high, and there is little guidance for nursing homes on how to isolate safely, while maintaining the human dignity and personhood of the individual with dementia. This commentary discusses strategies for effective, safe, and compassionate isolation care planning, and present a case vignette of a person with dementia who is placed in quarantine on a dementia unit.

Last updated on hub: 08 October 2020

Activities delivered at home by family carers to maintain cognitive function in people with dementia socially isolating during COVID-19: evidence for non-technology based activities / interventions

Centre for Evidence Based Medicine

A rapid review to identify evidence for which non-technology based activities that can be delivered at home by family carers are effective in maintaining cognitive function in people with dementia who are socially isolating during COVID-19. These interventions can include reminiscence therapy, cognitive stimulation therapy, music-based interventions, art therapy or meaningful activities. The review found very few studies where family carers were trained or supported to deliver an intervention within the home environment. However, it identified a small body of evidence to suggest that activities delivered at home by family carers may have some positive effects on cognition and mood. The evidence suggests that engaging people with dementia in activities that they find enjoyable or those that link to past work/hobbies can be helpful in giving a sense of purpose and meaning during a time of isolation. Non-technology based interventions may have some practical advantages for those currently isolating at home since they are inexpensive and do not require extensive training.

Last updated on hub: 01 June 2020

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