This is the first study to report on the level of understanding of and adherence to COVID-19 public health measures in PLWD. Comprehension, and as a result adherence, was mostly very poor in PLWD, and linked to occasional behavioural problems, including agitation and frustration. Lack of comprehension also resulted in some PLWD putting themselves in dangerous situations without adhering to public health measures, with Society not always supportive and adaptive to the needs to PLWD in light of the restrictions.
Most PLWD, as reported by their carers, failed to comprehend most or all public health measures, and had to be reminded several times a day as to why they were not allowed to continue going to support groups or going for walks outside. As PLWD who participated in the study were aware of the restrictions and adhered to them, it is likely that PLWD who took part in our study were in the earlier stages of the condition as they also had capacity to consent. This suggests that the more advanced the dementia, the more difficult it is for PLWD to retain the new, and frequently changing, information about public health measures, in line with their deterioration of short-term memory abilities . Thus, PLWD in the more advanced stages are likely at greater risk to put themselves in dangerous situations, such as entering supermarkets without face coverings and not adhering to hygiene and social distancing rules, due to their lack of understanding and ability to process new information. This suggests an urgent public health need to protect PLWD better.
It is important to place the experiences and understandings of the restrictions into context. At the point of data collection, the UK was in lockdown 1 from March to late June, with restrictions eased late June/ early July, when follow-up interviews were collected. Since then, the UK has seen two further lockdowns (lockdown 2 in November 2020; lockdown 3 since 31st of December 2020), as well as nation-specific restrictions. England, Wales, Scotland, and Northern Ireland are deciding their own levels and types of public health restrictions, and in England, a tier system has been introduced as of summer 2020. Each Tier (outside of lockdown times) has been rated based on the levels of infections, with most recently prior to lockdown 3 a 4-Tier system having been in place. Tier 4 restrictions were effectively like a lockdown scenario, with all non-essential retail and food and drink outlets closed, and people only recommended to leave the house for exercise or to access essential services (i.e. supermarkets or health care services). This also involved not seeing anyone indoors or outdoors except 1 person outdoors from a different household or someone from within a support bubble. Even for people without dementia these rapid and constant changes, although necessary, have become difficult to follow at times. Thus, the difficulties PLWD have experienced at the time of data collection are likely to be further exacerbated since with restrictions much more varied than previously.
PLWD are not the only ones affected by these restrictions however. Due to the lack of understanding of public health measures, PLWD can experience greater behavioural difficulties, such as agitation, which are already common in dementia in general . Thus, it appears that the public health measures in place have further increased behavioural issues, which in turn can be difficult to cope with for carers. Caring for someone with dementia can be stressful and very demanding in itself , with COVID-19 having placed additional levels of burden onto unpaid carers. Carers are vital in supporting PLWD living well and independently at home, but this also raises the issue of carers needing to be considered as people requiring support in their own right, in line with the Care Act .
We therefore propose COVID-19 public health measures to be tailored and implemented better on three different levels to benefit PLWD and carers: On an individual, service, and society level. Figure 1 illustrates these levels of recommendations and how these are interlinked.
On an individual level, both the PLWD and the carer need to be addressed separately. Information on public health measures needs to be simpler and clearer for PLWD to understand, and not only in the form of written guidance, but other means including videos for example. As PLWD struggle retaining information depending on the severity of the condition, PLWD require frequent reminders. Thus, clearer guidance via different channels could potentially be one way to reduce some carer burden, with carers less likely required to repeat the restrictions to the PLWD. Carers need to be recognised as persons in their own right, not as an attachment to a PLWD. Due to the increased burden of reminding PLWD about the restrictions and ensuring they adhere to these, better psychological and social service support is required for carers to support them in supporting the PLWD well. This can involve psychotherapy, Cognitive Behavioural Therapy, or any other means of therapy for example, and is fully dependant on the needs of the carer.
On a service level, services need to be adapted better to providing remote support. The pandemic is going to stay for the foreseeable future, despite vaccinations at different rates in each country and considering emerging variants of the virus, with likely easing and imposing of tighter restrictions again. Services therefore need to be delivered remotely as much as possible, by for example transferring dancing classes to creating videos for PLWD and carers to watch and enjoy together as opposed to attending classes in pre-pandemic times. It is important to recognise the barriers to remote support for many PLWD however, either due to their dementia subtype and vision difficulties, or due to high rates of digital illiteracy in older adults, or financial reasons and being unable to afford a computer and internet [10, 15]. One way to slightly overcome the barrier of digital illiteracy in many older adults may be to provide services, where possible, over the phone, and to provide assistance in using the internet and interventions to improve digital skills. As evidenced, remote support cannot replace face-to-face services, and many PLWD and carers do want direct social contact with their peers . Given that many PLWD are aged 70+ and might have underlying health conditions, thus classifying them as vulnerable to the virus, it may be impractical at high-risk periods of the pandemic to recommend face-to-face services in a safe fashion (i.e. socially distanced, face coverings). To ensure that services can continue to exist throughout the pandemic and provide full face-to-face support again afterwards, it is important for the government to support the often small businesses providing such services.
On a societal level, we recommend that staff in shops and services are more aware of ‘hidden disabilities’, such as dementia or learning disabilities, where people with the condition are not always able to understand restrictions, adhere to them, or be left on their own without their carer. One way is by increasing the rollout of ‘Dementia Friends’ for example. This has already been picked up within discussions of the policy of wearing face masks and disability laws in the US for example , and highlights an urgent need for society to support and accommodate PLWD, amongst others, better in staying safe during the pandemic. Another way for society to adapt restrictions and enable PLWD to still engage in an active social and physical life is for example for outdoor spaces such as parks to create socially-distanced areas for PLWD and other vulnerable groups.
These are only some recommendations on how public health restrictions can be adapted and tailored to support the needs of both PLWD and carers, and aligns with a recent report British Psychological Report on how to support vulnerable people, including those living with dementia, coming out of ‘shielding’ . In light of the severe impact of public health measures on the mental and physical lives of PLWD and carers, these recommendations can be broadened by having in-depth co-production workshops with service providers, local councils, clinicians, as well as those affected by dementia.