Frontotemporal dementia in Covid-times

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

Frontotemporal dementia is a focal form of dementia, which is clinically and pathologically distinct from other dementias (Snowden et al., 2002, p.140). It impacts behaviour, personality and language, which is unusually present prior to memory decline (Neary et al., 2005; Bang et al., 2015). Whilst any individual living with and caring for someone with dementia will often experience high levels of carer burden, depression and anxiety (Rosness et al., 2008), FTD can come with additional challenges for carers. For example, it commonly affects younger people under the age of 65, which has been associated with higher levels of carer burden (Lim et al., 2018). Furthermore, it is a much rarer form of dementia, meaning that there is a lack of literature around caregiving, much of which is focused on Alzheimer's disease (Massimo et al., 2013). Due to these stark differences in presentations, the needs of carers of people with FTD are significantly higher (Egan et al., 2008) and carers have often felt dissatisfied with the services and support they receive compared to carers of people with other forms of dementia (Rosness et al., 2008).  

In relation to the Covid-19 restrictions, people with any form of dementia may have had difficulties remembering the safeguarding procedures and lacked the ability to understand the information presented to them by the Government (Wang et al., 2020). Additionally, those with 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. Brown and colleagues (2020) noted that the pandemic exacerbates the vulnerabilities of those with dementia 'due to both the morbidity and mortality from Covid-19 and the indirect effects of the pandemic on the social supports and the health care system on which they depend'.  

We work closely with our neurology colleagues to care for FTD patients and their families. We assess cognition 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.  

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, and/or had access to respite. 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 (Brown et al., 2020). 

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. Another had no option but to have their lodgers move out as their loved one was unable to distance themselves, creating a financial burden on the family. Any attempts to enforce the guidelines led to further challenging behaviours. For example, one said their spouse became verbally aggressive after they had told them that their favourite restaurant was closed, accusing them of lying. Other families also reported higher frequency of angry outbursts, including physical aggression. One spouse talked about how their loved one blamed them for not allowing them to go out, stating they felt like a prisoner, which then resulted in objects being thrown. Another spouse talked about feeling frightened of their loved one's behaviours, and how being cooped up inside with them has made them feel very anxious. Many families also reported feelings of guilt and distress, as they worried their loved ones may contract Covid-19, or run the risk of prosecution for breaking social distancing rules.

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. Many of these families also reported that their loved one enjoyed car journeys and that this typically mitigated behavioural difficulties, but they had ceased using this strategy due to the advice not to travel. In these cases, we provided families with a supporting letter explaining their loved ones' condition and the benefits of taking short car journeys for managing behaviour and reducing distress. This meant that families could continue to use this strategy without feeling concerned that they would be fined by the police. 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. 

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. O'Shea (2020) puts forward some useful recommendations in their most recent article 'Remembering people with dementia during the Covid-19 crisis'. They described 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. This was also noted by O'Shea (2020), who described the importance of listening and empathy, both of which can be provided through the means of a telephone call. It has served as a reminder that we need now, more than ever, to 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 but large population is not left behind or forgotten. 

References

• Bang, J., Spina, S., & Miller, B. L. (2015). Frontotemporal dementia. The Lancet, 386(10004), 1672-1682.
• Brown, E. E., Kumar, S., Rajji, T. K., Pollock, B. G., & Mulsant, B. H. (2020). Anticipating and Mitigating the Impact of COVID-19 Pandemic on Alzheimer's Disease and Related Dementias. The American Journal of Geriatric Psychiatry.
• Levy, M. L., Miller, B. L., Cummings, J. L., Fairbanks, L. A., & Craig, A. (1996). Alzheimer disease and frontotemporal dementias: behavioral distinctions. Archives of neurology, 53(7), 687-690.
• Lim, L., Zhang, A., Lim, L., Choong, T. M., Silva, E., Ng, A., & Kandiah, N. (2018). High caregiver burden in young onset dementia: what factors need attention?. Journal of Alzheimer's Disease, 61(2), 537-543.
• Massimo, L., Evans, L. K., & Benner, P. (2013). Caring for loved ones with frontotemporal degeneration: The lived experiences of spouses. Geriatric Nursing, 34(4), 302-306.
• Neary, D., Snowden, J., & Mann, D. (2005). Frontotemporal dementia. The Lancet Neurology, 4(11), 771-780.
• O'Shea, E. (2020). Remembering people with dementia during the COVID-19 crisis. HRB Open Research, 3(15), 15.
• Rosness, T. A., Haugen, P. K., & Engedal, K. (2008). Support to family carers of patients with frontotemporal dementia. Aging and Mental Health, 12(4), 462-466.
• Rosness, T. A., Haugen, P. K., & Engedal, K. (2008). Support to family carers of patients with frontotemporal dementia. Aging and Mental Health, 12(4), 462-466.
• Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., Molinuevo, J. L., ... & Weidner, W. (2020). Dementia care during COVID-19. The Lancet, 395(10231), 1190-1191. 

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.