Frontotemporal dementia and COVID-19 – insights from the hospital

As the UK’s leading dementia research charity, Alzheimer’s Research UK is focused on driving research breakthroughs that bring hope to people with dementia. Sadly, people with dementia have borne the brunt of COVID-19, with figures suggesting more than a quarter of those dying in England and Wales have been people with the condition.

Kayleigh Watts, from Addenbrooke’s Hospital in Cambridge has worked with people with frontotemporal dementia (FTD) and their loved ones during the Covid-19 pandemic. She reflects on the impact of COVID-19 on those with FTD, in a piece originally written for the Psychologist Magazine.

The Impact of COVID-19

As COVID-19 isolation and lockdown measures were introduced, the uncertainty of not knowing what was to come led to increased feelings of anxiety and a yearning for social connection.

We were all told to distance ourselves, to stay away from other people as much as we possibly could and to stay indoors (in some instances shielding completely).

While this required the whole population to adapt their behaviour, these instructions presented unique challenges for those diagnosed with frontotemporal dementia (FTD), as well as their carers and loved ones.

The challenges of frontotemporal dementia

Frontotemporal dementia is a form of dementia, which often impacts behaviour, personality, and language skills, generally before any memory decline.

Whilst any individual living with and caring for someone with dementia will often experience high levels of carer burden, depression, and anxiety, FTD can come with additional challenges.

Those with any behavioural difficulties associated with FTD have likely struggled with adhering to social distancing and hygiene guidelines because the very nature of FTD means that patients lack insight into their difficulties and do not have concerns for social conventions.

Insights from the hospital

We know the pandemic has exacerbated the vulnerabilities of those with dementia and the indirect effects of the pandemic on the social supports and the health care system on which they depend. At Addenbrookes hospital in Cambridge I work closely with our neurology colleagues to care for FTD patients and their families.

Our teams assess memory and thinking and offer families psychological and practical support. Before the recent restrictions, we had been running a support group for spouses, carers and families to facilitate the sharing of experiences and encourage peer support.

Like many other services, our department was unable to continue as normal with our support group due to the COVID-19 restrictions.

However, we recognised that the COVID-19 restrictions may also pose additional challenges for people with FTD and their loved ones. In response to this we developed a telephone support service for families of those with FTD during the lockdown period. This ranged from initial contact in order to make families aware of our service, and support with accessing essentials such as food and medication along with more tailored support with strategies to help them manage their loved ones at home.

What challenges have people faced?

For a small number, the lockdown period did not pose any additional challenges, and families reported managing well at home, particularly in cases where they continued to receive support from services, family and friends.

Of those that did report facing additional challenges, many described limited services available in the community. This meant that they were required to provide increased care to their family members, and in some instances, became the sole caregiver. In these cases, they ran the risk of exhaustion and burnout as they no longer had access to the carer respite that they once had and were isolated from their own support systems

Carers also described their loved ones displaying new and unusual behaviours, often aggressive, as well as struggling to follow government guidelines. For example, some would wander outside in public spaces or approach others despite government guidelines. One spouse said their loved one came home after a walk in the woods wearing a dirty mask they had found on the floor. Most were unable to keep up with hygiene regimes, such as washing their hands and not touching their face. One spouse talked about sectioning off part of the house in order to isolate themselves away from their loved one.

Working with families

We worked closely with families over the telephone to develop behavioural strategies to implement whilst at home, with the aim of reducing and deescalating aggressive behaviours which are commonly displayed in FTD. We also provided psychological support and supporting letters when the care needs of patients changed and they could no longer be cared for at home and liaised accordingly with the patient’s consultant.

Keeping in touch virtually has been a source of comfort

We were also aware that the peer support element of the group would be a significant loss to carers, and so set up an email group. Group members were able to stay connected via email, sharing their experiences, offering and receiving support from those who were experiencing similar challenges.

Often, carers and families reported feeling helped by support from family and friends when they turned to technology and kept in touch through telephone or video calls. One family kept in touch remotely with their church group, which they found very comforting, and another joined a choir group via Zoom.

Whilst many community groups became disrupted, many spouses became creative by incorporating alternative activities, for example, personal training classes via Zoom or playing table tennis in the garden. On a more cognitive level, families engaged their loved ones in stimulating activities such as puzzles and household projects such as gardening and painting.

We must make sure people with FTD are not forgotten

The disruption caused by the virus placed emphasis on the need to consider strategies for support for those most vulnerable, particularly those diagnosed with FTD and their families.

Experts put forward some useful recommendations describing the need for more creative methods of communication with those diagnosed and highlighted the essential need for providing practical and emotional support, however virtually that may be.

In our department, we have found that simply allowing families a space to reflect and discuss difficulties has been a sufficient source of support.

Now, more than ever, we should remember those affected by FTD and all dementias and consider the ways in which we can support people and their families so that this underrepresented group is not left behind or forgotten.

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To help those with FTD we really need to see life-changing dementia treatments. Research has been put at risk by COVID-19 with one in three dementia researchers thinking of leaving the field.

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Acknowledgments

Many thanks to Dr Heather Condon (Clinical Psychologist and Clinical Supervisor), Dr Emma Woodberry (Clinical Psychologist and Head of Department) and Dr Claire Illingworth (Clinical Psychologist) who supported me in writing this article.