Real stories

Needing support as a young carer during coronavirus - Susanne's story

Susanne’s husband David was diagnosed with mixed dementia four years ago, when he was 60. Although David retired from teaching before his diagnosis, Susanne continued to work part-time.

They are both normally very active, and love going for walks and trips with their local Younger Onset Dementia group in Norfolk. David also attends a day care centre, which organises trips and activities, to make sure he stays active.

Since coronavirus, however, these activities and support have all had to stop. 

‘It has gone from a full programme of events for everyone to nothing, almost overnight’ says Susanne.

With the day care facilities closed, and visits with the Young Onset dementia group stopped, Susanne was left caring for David 24/7 with no respite. 

This recent period has been very stressful for both Susanne and David. Particularly with lockdown measures in place that may be difficult for people living with dementia to understand and stick to. 

Susanne has struggled to go to the shops and queue to get in, as she cannot leave David at home. He finds social distancing difficult to understand.

Frustrated feelings 

‘The perception is that people living with dementia sit in a chair and stare into space,’ says Susanne, ‘but this is far from the case with David.’

‘He is fit and active – he wants to get out and do stuff and doesn’t understand why he can’t do the things he normally does. 

'If I can’t provide constant attention and entertainment, he quickly becomes bored, frustrated and argumentative.’

The Younger Onset Dementia group that Susanne and David are part of have been trying to keep up social contact virtually. But it can be very difficult for the people living with dementia in the group to take part in this, and it is nowhere near the extent of social contact the group had before coronavirus. 

Worsening symptoms

The group have also noticed deterioration in some of the symptoms of dementia. Many believe these have been made worse as a result of the lockdown and lack of social contact. 

According to Susanne, David’s behaviour has become more repetitive. He continually opens and shuts the front door, paces and takes things apart in the house for something to do. 

Susanne has had to call the police once since lockdown began, when he wandered off on a walk. This almost happened on another occasion when he left the house because he wanted to be active, and did not understand the lockdown rules.

Susanne had no support to deal with this throughout lockdown, until David’s day care centre recently reopened.

Help required

Susanne feels it would have made a massive difference to see the Government recognise the huge role unpaid carers have played throughout lockdown.

'It has been very lonely for me,’ says Susanne. ‘My husband can’t hold a conversation, and will often go off in another direction, veer into the middle of the road or walk into people if we go for a stroll.

‘When the Government have been talking about people on their own being lonely, and making considerations for them, I feel that we have been forgotten. ‘

‘I would like to see explicit guidance for carers and those with dementia, should restrictions be reintroduced, or should any of us have to quarantine. We need to be able to get support from professional care providers, or family and friends when necessary, without the risk of infringing lockdown rules. 

‘There is also the issue of things like PPE to consider. As far as family carers go, we should have access to same concessions as care workers during this time of crisis. We are caring 24/7, and yet are not being considered by the Government.  

‘There seems to be an assumption that friends and family will magically appear from somewhere. But everyone is in the same position and there is no one to help – telephone services are not the answer!'