AUTHORS: Anna Svorenova and Dr Michael Craig

Medical discoveries, improved healthcare, and innovations in technology mean that people are living longer than ever. But this great news comes with a catch; age is the biggest risk factor for dementia.

Dementia is an umbrella term which refers to a group of neurodegenerative conditions that progressively damage the brain and impact a person’s thinking skills, often including their memory, attention, and language abilities. Current statistics suggest that around 850,000 people are living with dementia in the UK, and, strikingly, 1 in 3 people born today will develop dementia in their lifetime. By 2050, it is expected that there will be more than two million people in the UK with dementia.

For people in the later stages of dementia, completing even basic everyday tasks, such as counting money to pay for something in a shop, making a cup of tea, telling a story to a friend, or recognising a family member, might become difficult. Because of these challenges, people with dementia often rely on help from others. This can range from basic support to more complex care. In most cases, this help can only be delivered in person and not remotely or online. In-person social activities, for example, dementia cafes in the community, also play an important role in the social support network for people with dementia. 

These social support networks are important. In a recent study, it was found that people with dementia who live alone and are deprived of social interaction are more likely to experience loneliness, feelings of depression, and poorer quality of life. Social support and stimulation can also benefit thinking skills. A review of research findings found there was good evidence that engaging in stimulating activities can help to maintain and possibly even improve thinking skills in people with dementia. Amazingly, they suggested that social stimulation was more beneficial than any existing medications.

These findings show how important social networks and stimulation are in helping people with dementia to live healthy, independent lives. It is therefore reasonable to assume that any major disruption to these activities could have profound consequences. Unfortunately, the landscape for dementia support changed dramatically in early 2020.

On 23rd March 2020, the Prime Minister announced that the UK would enter a national lockdown to reduce the spread of a novel coronavirus (COVID-19). Since then, further lockdowns have been imposed alongside more general restrictions, including social distancing and stay at home guidance. These restrictions have helped reduce the transmission of COVID-19 and reduce fatalities, especially in high risk groups that included older adults and people with underlying health conditions such as dementia.

The wider impact of the pandemic on people with dementia and their close ones is being monitored closely by organisations such as the Alzheimer’s Society. This is partially because many people with dementia have had limited access to in-person support networks and activities in the year since the first lockdown was announced. This has included, for example, a limited ability to attend dementia cafes in the local community and an extended period where visits to care home residents were not permitted.

We know that these types of social activities are important for wellbeing and thinking skills, so what impact has this had? It is possible that lack of social interaction and engagement has negatively affected people with dementia through increased loneliness, feelings of depression, and encouraged declines in their thinking skills. This possibility is in keeping with a report from the Alzheimer’s Society in June 2020 that suggested that people with dementia were the “worst hit” by the initial lockdown, where a striking 82% of people affected by dementia reported an increase in dementia symptoms. Also, 79% of care home managers reported that lack of social contact had contributed to health and wellbeing deteriorations in their residents with dementia. Continuing research in this area will be important to help us understand the impact of the pandemic and how to best manage future possible lockdowns to protect people with dementia as best possible.

The dramatic change from normal ways of working meant that dementia organisations and service providers were required to respond rapidly and deliver social support in new ways that could be as impactful as possible. While in-person support will continue to hold a special role in the lives of those with dementia, one success story is the ability to deliver Playlist for Life activities online and remotely. Playlist for Life uses music from an individual’s life to stimulate conversations, singing, and general wellbeing. A 2017 review of research investigating the effectiveness of music therapy in dementia concluded that it is “the only convincingly effective intervention” for reducing behavioural symptoms, including aggression and agitation. During the pandemic, the Alzheimer’s Society successfully converted their Singing for the Brain activities to an online format that can be delivered through Zoom or over the phone (“Ring and Sing”). The flexibility of this programme and ability to deliver it online offers new opportunitis for ways to provide social support for people with dementia.

What does the future look like for providing social support to people with dementia? While the wider impact of the pandemic on people with dementia will not be known for a long time, green shoots are emerging. Vaccination rates are rising, and restrictions are easing, so it should be possible for people to return to attend regular social activities soon. It is hoped that we can also learn from the success of converting some social activities to run remotely. In the future, it might become standard practice to deliver a mix of in-person and remote social support activities that can improve accessibility for people who can’t attend in-person events. This could help these activities reach more people with dementia in the community. Research in this area could be of great benefit.

Dementia Action Week

This article was written for Dementia Action Week (17 – 23 May 2021), which is an annual weekly event to raise awareness of dementia. You can read about Dementia Action Week and how you can help here and by following #DAW2021 on social media.

Can you help with our research on this topic?

We are investigating whether people feel the coronavirus restrictions have affected their memory and general thinking skills. We hope the outcomes of this – and other excellent work being conducted around the world – can inform our understanding of the impact of social restrictions and how we care for people with dementia if we experience future pandemics.

The study is recruiting people aged 18 and over who live in the UK. You can read more about the study and take part here.

About the authors

Anna Svorenova is a 2nd Year Psychology student in the Department of Psychology. Dr Michael Craig is a Senior Lecturer in the Department of Psychology and a member of the Psychopathologies subgroup of our Health and Wellbeing Research Group. You can read more about the work of the group in the Health and Wellbeing blog

References

Abraha, I., Rimland, J. M., Trotta, F. M., Dell’Aquila, G., Cruz-Jentoft, A., Petrovic, M., … & Cherubini, A. (2017). Systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. The SENATOR-OnTop series. BMJ open, 7(3), e012759.

Alzheimer Research UK. Dementia Statistics [2021]. Retrieved from: https://www.dementiastatistics.org/statistics/numbers-of-people-in-the-uk/

Alzheimer’s Society (2020) Worst hit: dementia during coronavirus. Accessed on 20th April 2021. Retrieved from: https://www.alzheimers.org.uk/sites/default/files/2020-09/Worst-hit-Dementia-during-coronavirus-report.pdf

Alzheimer’s Society. Survey: Caring for a person living with dementia during the COVID-19 pandemic. [Online] 2020. Retrieved from: https://www.alzheimers.org.uk/COVID-19-report-news

Pedersen, S. K., Andersen, P. N., Lugo, R. G., Andreassen, M., & Sütterlin, S. (2017). Effects of music on agitation in dementia: a meta-analysis. Frontiers in psychology, 8, 742.

Prince, M. et al. (2014) Dementia UK: Update Second Edition report produced by King’s College London and the London School of Economics for the Alzheimer’s Society

Victor, C. R., Rippon, I., Nelis, S. M., Martyr, A., Litherland, R., Pickett, J., … & IDEAL programme team. (2020). Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme. International journal of geriatric psychiatry, 35(8), 851-858.

Wittenberg, R., Hu, B., Barraza-Araiza, L., & Rehill, A. (2019). Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019–2040. Care Policy and Evaluation Centre, London School of Economics and Political Sciences.

Woods, B., Aguirre, E., Spector, A. E., & Orrell, M. (2012). Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews, (2).

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