Families of dementia patients in care homes demand a bigger say on visits

Relatives of isolated and confused residents fear their voice is not being heard

Anxious families of people with dementia who have been isolated in care homes during lockdown have called to be considered as equal partners in care of their loved ones.

T h e National Dementia Carers Action Network (NDCAN) says family members can make as valuable a contribution to the support of their loved ones as care home staff and other professionals and that they should be supported to do so. The call comes amid growing evidence that the stress caused by lockdown accelerated a decline in health for care home residents living with dementia. NDCAN said: “We are a vital part of the system but our contribution seems very low on the priority list currently and the role we can play in caring for our loved ones needs to be recognised. “Our wellbeing is also affected by being excluded from their lives. We have cared for these people 24/7 and know their needs so well – we can be their voice and are part of their history and what makes them who they are.” More than 45% of Covid-19 deaths in Scotland since the start of the Covoutbreak have occurred in care homes. Hundreds of people diagnosed with dementia and related conditions homes. Scotland’s leading dementia charity Alzheimer Scotland has also voiced concerns that lockdown measures led to increased levels of distress, loneliness and isolation for people with dementia. NDCAN member Janette Kean said: “In many care home settings family members are referred to as ‘visitors’ but we are so much more than that. “We have been excluded from their homes with no consultation and we know that many people with dementia have given up as a result. When someone has advanced dementia, they may be unable to make or communicate informed decisions of their own. “Even when we have appropriate powers of attorney or have been appointed by the court as a guardian, our views are often being disregarded.”

Jim Pearson, Alzheimer Scotland’s director of policy and research, said: “This reflects what our 24-hour Freephone Dementia Helpline volunteers and local staff have been hearing first-hand.

“The existing Scottish Government guidance already allows for essential visitors which, if implemented consistently, would recognise the value of carers as equal partners.”

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