John’s campaign was set up in 2014 to promote the rights of people with dementia in hospital to have a family member stay with them beyond normal visiting hours. This is endorsed by many hospital trusts and care homes, and to date around 1600 care organisations have signed up to pledge their support. Care homes which hitherto had resented relatives’ involvement as ‘interference’ came to see it as a vital resource. Some managers who previously feared prying eyes discovered that working more transparently could bring unexpected benefits, and even improved CQC ratings. Some have maintained safe family contact throughout norovirus outbreaks simply by training relatives in the same hygiene protocols that their staff use.
And then along came Covid-19 – requiring drastic physical distancing and shielding measures – and put a stop to all that. At the time of writing, many clinical and care staff are living apart from their families to avoid passing it on to them. So even the keenest John’s Campaign ambassadors have had to close their doors to virtually all visitors, and anyone with relatives in residential or nursing care must be going through an especially worrying time. The government guidelines specifically allow some family visiting at end of life and in dementia, but that is not always possible to arrange.
However, some care homes are developing innovative ideas to help residents keep in touch with their families during lockdown. ‘Virtual visiting lounges’ enable relatives to ‘meet’ by arrangement via Skype, Zoom, FaceTime or WhatsApp, with staff facilitating the link where necessary. Caution is needed in advanced dementia, when a disembodied voice or unrecognised face could become more confusing than comforting. But with careful management this has been a lifeline for many, enabling them to maintain connections with their nearest and dearest.
Some care homes are using technology to live-stream their exercise sessions for others to join in, and professional and amateur performers are entertaining residents from their own homes. See John’s Campaign blog for more ideas. I recently took part in an all-age disco run from the Weekday Wow Factor organiser’s living room, with a DJ working from his. The disco is normally held at one of Glasgow’s hottest nightspots and residents from a local care home regularly attend with care staff. This time it was streamed into the home, where the other residents could join in too.
If it has been hard for us to keep up with the latest official guidance, how much more difficult must it be for people with dementia to understand, let alone retain, those ever-changing rules. In most types of dementia, the storage of factual information becomes increasingly patchy, but the memory retains the feelings that went with those missing facts. If you tell the person something alarming, they may register the alarm without the message, so repeatedly trying to explain it may be unhelpful. But for the same reason, people with dementia tend to live more in the present than in the future. As a result they may cope better than their families fear they will in the absence of visits during an extended period, as long as they are comfortable and reasonably content where they are.
Shirley Pearce is an occupational therapist specialising in dementia. She set up the charity Understanding Dementia in 2018 to lessen the impact of dementia on those who live with it. Face-to-face presentations and fundraising events are currently suspended. For further advice and information about online training and information sessions, to purchase a booklet of practical tips or join the mailing list, contact Understanding Dementia or ring 0774 350 1149.