CARERS of people with dementia have demanded they are treated as equals when it comes to looking after loved ones in care homes.

The National Dementia Carers Action Network (NDCAN) say 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.

Their calls come as growing evidence has shown that stressed caused by lockdown has contributed to a faster decline in people with dementia who are living in care homes.

Part of the reason is believed to be a lack of contact with familiar faces such as friends and relatives.

In May, the Scottish Government started allowing a limited number of visitors to see their relatives who were in homes.

NDCAN, a campaigning group for carers of people with dementia, say their contribution was “very low” on the priority list during the first Covid-19 lockdown which started in March.

A representative for the group said: “Research tells of the enormous contribution unpaid carers make to the social care system; that creaking system would be in even more difficulty without them.

“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 as a critical part of the support structure.

“Politicians appear to assume that once we have placed our loved ones in care that we are no longer carers yet the part we can play in their wellbeing is vitally important.

“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.”

According to the latest Scottish Government figures, 46% of all deaths related to coronavirus have occurred in care homes, with reports recently emerging of patients being discharged to care homes despite testing positive for the disease.

Five of the country’s 14 health boards are understood to have discharged a total of 37 patients to homes when they were positive for the virus.

Leading dementia charity Alzheimer Scotland said it is concerned that the pandemic has disproportionately affected people with dementia, in terms of coronavirus-related and excess death rates.

Dr Donald Macaskill, Chief Executive of Scottish Care, reiterated these concerns in April saying :”It has become clear that the levels of distress, of emotional and psychological harm, upon those living with dementia in our care homes and in our communities in Scotland are becoming more and more acute and worrying.”

Jim Pearson, Alzheimer Scotland’s Director for Policy & Research said:“Alzheimer Scotland fully supports the National Dementia Carers Action Network’s call for carers to be viewed as equal partners in care.

“People with dementia and their families have been disproportionally impacted by this pandemic and the measures in place to contain it.

“There is growing evidence that the lack of social contact and breakdown in daily routines has led to a substantial decline in the physical and mental health of people with dementia, including increased levels of stress and distress and significant cognitive decline.

“This reflects what our 24 hour Freephone Dementia Helpline volunteers and local staff have been hearing first hand from the tens of thousands of people we have supported throughout this crisis.

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

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.

“Being an equal partner in care means being part of the risk assessment and decision-making, knowing what our loved ones previous wishes would have been.

“We recognise that there is a balance in order to prevent the spread of infection, but we absolutely must be part of that discussion.

“We recognise too that this level of involvement is not the choice of all family members and in the present climate it would be very difficult in terms of infection control but it should be possible to consider each resident’s needs and situation and make individual decisions.”

A Scottish Government spokeswoman said: "We recognise the impact limitations on visiting due to the pandemic has had on care home residents and their families.

“We understand that distress and confusion caused as a result of pandemic-associated measures can be modified by the presence of familiar faces of family and friends who visit – family carers are recognised as equal partners in care and visiting is a fundamental part of the care of those who live in care homes, particularly for people living with dementia.

“Throughout the COVID-19 pandemic essential visits have always been permitted for those in end of life situations or exceptional circumstances including those who are experiencing stress and distress. As such, we would urge care homes to continue to support such visits.

“The Scottish Government published guidance on 25 June outlining a staged approach to the reintroduction of visiting in care homes, where it is clinically safe to do so, over and above essential visits.

“Since 3 July care homes have been able to permit residents to meet with one designated visitor outdoors provided their home meets strict criteria with infection control measures remaining in place. This increased to 2-3 outdoor visits from two households from 10 August. The Health Secretary has also asked care homes to develop a plan for moving safely to indoor visiting which should be signed off by 24 August.”

 

'There's only one thing worse than the state she's in now and that's not having her'

Ian Dale, a carer for his wife Wilma, has told of his heartache at being unable to see her for five months,

The retired engineer will finally be allowed to come face to face with his wife, say hello and tell her he loves her next week.

Ian, 75, from Balmullo, Fife, is one of thousands of people kept apart from loved ones who were left isolated in care homes as the Covid 19 pandemic struck.

He and Wilma have been inseparable over the course of a 55-year marriage which has taken them the length and breadth of the UK.

Since the first week of March, though, Ian has faced the peculiar agony of knowing that while 76-year-old Wilma is alone in a care home in a terrifying situation a few miles away, he can’t be close to her.

Wilma, who has Alzheimer’s disease, is no longer able to meaningfully interact with her husband.

Until lockdown though he was able to comfort her simply by holding her hand and stroking her cheek during his visits to St Andrews care home in Fife.

Ian said: “Wilma has a living will and requested no intervention and she has had respiratory pneumonia a couple of times.

“The last time the doctor had prescribed medication to ease her way out.

“That was on my mind quite a bit: would I finally have to make the decision that said no matter what she had, there wouldn’t be any intervention?

“That caused a few sleepless nights. We’ve been married for 50 odd years and I’ve known her for nearly 60. There’s only one thing worse than the state she’s in now and that’s not having her. She’s not had any cognitive ability for five or six years now, she’s totally bed-bound and on visits all you could really do was sit and hold her hand, stroke her face and try to comfort her.”

Ian admits that he has struggled to be apart from Wilma and feared the worst in March when there were two positive covid tests in the home. These turned out to be false though and Ian has nothing but praise for management and staff.

While Wilma has survived the pandemic Ian admits that in his darker moments he feared he may never see her again.

He said: “I built a summer house for my wife some years ago, which we laughingly refer to as “Wilma’s shed”.

“I was sitting out there the other day with some music on and all of a sudden the tears came.

“I was a manager in an engineering company which employed 900 people and I have always thought of myself as a fairly tough old cookie.

“But I am not as hard as I thought I was.”