Dementia: Covid-19

Patricia Gibson Excerpts

Thursday 12th November 2020 Westminster Hall

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

I echo the congratulations and thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for her comprehensive and wide-ranging exposition of the effect of covid-19 on the those affected by dementia.

Yesterday, I participated in a debate—alongside several others here this afternoon—on family visit access in health and social care settings during the covid-19 outbreak. The two debates, though different, have significant overlap. I will try not to repeat myself. These matters are devolved to the Scottish Parliament, but as we face common challenges, it is appropriate for Members representing Scottish constituencies to take an interest and contribute to this important debate.

There are real concerns about how covid-19 has affected our constituents living with dementia. As we have heard, that effect has been deeply distressing and the consequences have been far-reaching and profound. I want to say more than I did yesterday about my own personal experience and insight into this. My mother-in-law, Iris, is in a care home in Saltcoats in my constituency. She has dementia and lockdown has caused a dramatic decline in her condition. I am no medical expert, but I do not believe her decline can be halted now. It is so bad that I do not think it will be reversed. I appreciate that might not apply in every case.

Even without the health pandemic, dementia is extremely distressing. Those who live with it lose a lifetime of memories and their sense of who they are vanishes. Just a few short years ago, my mother-in-law, Iris, was a long-serving Glasgow city councillor. She was a marathon runner and had run marathons all over the world. She thought nothing of travelling to the other side of the world simply for the joy of sight-seeing on her own. She was independent. She raised a family. She was always on the go, driven by a desire to improve her community. She was respected by all who knew her. Now Iris lives in a care home. She is unable to look after herself. She is confused. She is unable to recognise those dearest and nearest to her. She is a shell of her former self.

However, the speed of Iris’s decline since lockdown has been stark. Before lockdown, despite the dementia, she could have a chat and follow a simple conversation. Now she is barely able to speak. The isolation of covid-19 and the lack of stimulation has taken away her desire to live and she barely eats at all. I mention that because what has happened to Iris in the course of the covid-19 restrictions is not unique.

The lack of social contact with family, loved ones and even other care home residents, and the lack of stimulation that the restrictions have brought, have caused real distress for older people. They are locked in a world that is silent, solitary, confusing and bleak. It is a world that they do not understand, as the hon. Member for Birkenhead (Mick Whitley) has reminded us elsewhere—a world from which they and their loved ones fear they will never return.

We all want a return to normality. For people with elderly relatives, the fear is that their time left on Earth is so short that a wait for normality is distressing and frustrating. Some older people might not survive until normality returns, so they might never enjoy close contact again with their family. However, there are no easy or risk-free solutions to this problem—I said that in the debate yesterday. There is a very difficult balance between keeping our older people safe from covid and losing to them despair, and it is not easy to strike. I do not envy the Minister or anybody who is in charge of making those decisions.

It is important to remember that the average age of a person who dies with covid is 83. Many of the people who work in care homes will say that the older people dreadfully miss social interaction with other residents and their family, and it also takes a toll on those who work in care settings. Although we know that many people are keen to have contact with their elderly relatives who are suffering from dementia, people will also say—on the other side of the coin—that they are desperately keen to ensure that their elderly relatives are kept as safe as possible until we have a vaccine or the virus subsides with time. Whatever restrictions around care homes are lifted—I know that a number of hon. Members have called for that—they cannot be lifted without some risk to the elderly people who live in those care homes.

Let us not forget that older people living with dementia who are not in care homes need to be part of the conversation. Some older people with dementia are being cared for by close family relatives in their own home setting. As we have heard, carers will have faced their own difficulties since covid-19 restrictions were introduced. They, too, will be cut off and left on their own to manage as best they can with their caring responsibilities. Respite will be difficult to find, and shielding and covid-19 precautions shrink their world as they cope with a state of limbo in a world that has become much smaller for them.

The Scottish Government have been in regular touch with care representatives to ensure that their concerns are fully understood, and supporting unpaid carers has always been a priority for the Scottish Government—much more so now, in these difficult circumstances. The Scottish Government have established rights for all carers to have support and advice under the Carers (Scotland) Act 2016. The local implementation of those rights is backed by additional investment, which now stands at £39.5 million per year. That is so important, given the additional pressure that carers face due to covid-19. The carer’s allowance supplement increases carer’s allowance in Scotland by 13%, and it was one of the Scottish Government’s first priorities with its reserved social security powers, with an additional covid payment of £230.10 in June. That means eligible carers in Scotland will receive up to £690.30 more than those in the rest of the UK this year, with an additional £500,000 for carer organisations.

With all the uncertainty for our older people and their loved ones during covid-19, there is great distress. If someone is in their advanced years, they fear that they will never get to the other side of the pandemic and resume normality, which is what everyone wants. We have some prospect of a vaccine before too much longer. We are all keeping our fingers crossed for that, but we need to continue to look for creative ways to help combat the despair that we know so many older people with dementia feel and are confused about.

I said yesterday, and it is worth repeating, that for the large part we are talking about a generation whose youth was blighted by war and its aftermath, and now, in their twilight years, they are being blighted by this cruel virus in their old age. We need to protect and look after them. For many, the cost of doing that is the despair we have heard about today. The balance is very difficult to strike and there are no easy answers. I know the Minister feels the impossible weight of the task of trying to get the balance right. I hope she will be able to set out today what specific additional support may be available to those living with dementia, and those who care for those living with dementia, as this virus continues to blight their lives.