Coronavirus and dementia: the impact for people living in care homes and their families

The impact of the coronavirus outbreak in the UK has been far reaching, curtailing the freedom of citizens to go about their everyday lives to an extent that has never before been experienced in our lifetimes. As we move into the second week of ‘lockdown’ we have been advised that this situation is likely to last for many months. Adapting to these new circumstances is the key to surviving and maintaining our wellbeing. The human spirit is amazing, people are going to extraordinary lengths to help each other, and there is an upsurge of inventive ideas to keep people connected in this extraordinary climate. 

People living in residential and nursing homes are having to cope with separation from the people they love, as are their families. This is extremely painful and distressing: people with dementia living in care homes are some of the most vulnerable people in society. Contact with family members is paramount to their wellbeing. They need advocacy and compassion. 

Understandably, family carers are worried that their relative will deteriorate more quickly in these circumstances and will feel abandoned. It might be difficult for a person with dementia to grasp the sense of what a virus epidemic is, and to understand why family visits are not permitted.  

The situation is difficult for care homes too. There was little warning of the impending crisis. The Government published guidance for residential care, supported living and home care organisations on 13th March 2020 (updated on 19th March 2020) and the advice was unequivocal: Care home providers should stop all visits to residents from friends and family.

Here are some ideas and resources for family carers separated from a family member living in a care home in quarantine: 

1. It is important to maintain an open channel of communication with the management of the care home. This is a challenging situation for everyone, the care home manager and staff team will be under considerable stress, trying to keep the workforce healthy and maintaining a safe environment for all residents. Keeping a dialogue going ensures that your desire and intention to communicate with your relative remains on their radar. 
2. Identify a key member of staff to liaise with and check in on your relative at scheduled times. Ensure that any specific needs your relative has are known about and documented. Make sure that your relative’s life-story book is available in the care home and update it regularly with family news and pictures. Encourage care home staff to add to the life story book too. 
3. Make use of technology to communicate with your relative by using apps like Skype, WhatsApp, FaceTime. A staff member may need to support this process. Negotiate specific times with the care home, ideally when your relative is likely to be at their best. Being able to see your relative will help to reassure you of their wellbeing, and for them, seeing you on screen will help to reinforce familiarity and connection. 
4. Music is a powerful way to provide stimulation and create meaning for a person with dementia. Create a personal playlist for your relative and make sure that the care home has a means of playing this music in your relative’s room. Familiar and favourite music will help calm agitation and distress, which is a benefit for the care home too. 
5. Many care home residents are having to stay in their own rooms. Sending videos, postcards, pictures and messages, electronically and by post, will help to create a sense of comfort and familiarity. 
6. It might be possible to see your relative by standing or sitting on the other side of a window or glass door.  This has been successful for some family carers. Being able to see your relative, and for he/she to be able to see you, whilst speaking on the phone (or communicating with pictures and word cards) can be reassuring. However, this would not work for all people with dementia, some may find it doubly confusing, potentially precipitating a distressed reaction. 

As the pandemic takes hold and the population batons down the hatches for an extended period, it will be important to find a strategy that works for you if you are trying to maintain connection with a  relative in a care home. Some care homes will allow visits in exceptional circumstances. Check with the care home management what their policy is and keep the dialogue open, honest and balanced.

This is difficult for everyone. By having to prohibit visits from family carers, care homes have lost a key resource: many family carers are used to spending a lot of time with their relatives, every day or several days per week, carrying out key care responsibilities. Family carers are integral to the care team for a person with dementia. Without the help of family carers, care workers are under added pressure, especially since many are having to self-isolate at home themselves if anyone in their family has symptoms. 

Helpful organisations:

Dementia UK provides a helpline operated by Admiral Nurses – 0800 888 6678

Relatives and Residents Association is a national charity that supports, informs and speaks on behalf of older people in care – 020 7359 8136

Dementia UK and the Relatives and Residents Association have partnered to produce some helpful ideas for relatives and friends of people living in care homes: https://www.relres.org/keep-in-touch/

If you have tips and ideas for keeping connected, or have questions, concerns or worries, please do get in touch: barbara@livebetterwith.com

Read more about the coronavirus:

Coronavirus and dementia: social distancing and self-isolation

Coronavirus and dementia: ideas for staying active and well