Table 5 Strategies and unexpected positive reported by respondents

Strategies for coping with/managing the impact of COVID-19 restrictions

General:

Increased use of technology for maintaining existing connections and establishing new ones, e.g.:

“Family Zoom meetings have now become a regular event and will probably continue after Covid”

“I have managed to join Zoom groups with people that live further away so I would not normally attend their meetings as I’m not in the correct area”

Imposing routine, regular outdoor activity (e.g. walks in green spaces)

Engaging with meaningful and accessible activities within the home, e.g. evoking memories of the past by using photographs and memory books

Conflict avoidance strategies, e.g. steering conversation away from difficult subjects

bvFTD-specific strategies:

Maintaining a calm and peaceful home environment

Engaging activities such as puzzles, jigsaws, colouring and sticker books

Hiding food and drink as a helpful strategy for minimising over-consumption

Making the local community aware of the person´s diagnosis so they could understand the struggles to comply with restrictions

PCA-specific strategies:

Engaging with home-based activities which maximise other senses than vision, e.g. listening to podcasts or the radio

PPA-specific strategies:

Engaging with activities which minimise the demands on language and communication skills such as crafting and gardening

Unexpected positives arising from COVID-19 restrictions

Increased flexibility for carers’ with their work patterns, e.g. more opportunity for working remotely

Increased opportunities to nurture caring relationships due to decreased external demands on time

Increased opportunities for spending time on hobbies, creative activities and other restorative activities such as exercise

Being introduced to new technologies that helped with managing care demands, e.g. online grocery shopping

Having less to do increased the sense of calm within the home environment by reducing the levels of stress and anxiety that usually accompanied leaving the house and having to get to appointments or activities on time, e.g.:

“her mental health has improved, with isolation and no contact from anyone except carers (therefore less change and less confusion)”

A beneficial sense of camaraderie, along with a sense that the wider public were now more able to empathise with their situation, due to their own isolation, e.g.:

“her mental health has improved, with […] the sense of camaraderie of everyone suffering the disorientating effects of the covid lockdown, my mother in law has become happier more stable and much more coherent on the phone than before […] we think it is the fact that it is not just her who is suffering her changed perception of the world - all she hears on the radio is people talking about coping with a new reality the new reality now means we are all in the same boat together”

Appreciation for the local community as a result of the compassion, kindness and support shown in response to the pandemic and restrictions