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Living with Dementia Debate

On June 25th I took part in the debate on Living with Dementia in Westminster Hall.

You can see my contribution below, as well as the full debate at:

https://parliamentlive.tv/Event/Index/c152ce9f-d619-4d6e-8f61-c2ecef6d911f

 

 

 10.29 am

I, too, pay tribute to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this crucial debate.

As has been said, the number of people suffering dementia in the UK is 850,000—I apologise, because I have already said “suffering” instead of “living with”, but many people are suffering. We talk about what is being done in pockets and what is being done well, but that is not happening for all those 850,000 people. Some of them are stuck in their houses, some are tutted at by people behind them in supermarkets and some are made to feel unwelcome in certain places. Until we can say that all 850,000 of those people are living well with dementia, we have not done our jobs.

There are 90,000 people living with dementia in Scotland, and more than 3,000 of them are under 65. The impact on those people has been touched on. It is estimated that only two thirds of people with dementia have been diagnosed, and that means that we do not actually have a handle on the scale of the problem.

Alzheimer’s—a term that many people use interchangeably with dementia—is the commonest form of dementia, but there is also vascular dementia; in many patients, it is mixed. A rarer form of dementia, Lewy body dementia, causes a particular type of dementia, with less memory loss but big impacts on movement. In particular, it causes hallucinations, and our police and firefighters should know about that. If they have had 50 calls from the same patient, it may be not because there is a burglar, but because that person is having hallucinations of a burglar. That is why we need to integrate all our public services, so that they learn from each other. Other conditions, such as HIV and Parkinson’s, can also lead to dementia. Many people know about memory loss, but there is not so much awareness of the difficulties that dementia creates with making decisions, concentrating and spatial awareness. People with advanced dementia have real difficulty moving around in our environment, and the situation is even worse if certain parts of the brain are impacted.

Unfortunately, at the moment treatment is very limited; there have been no new drugs for dementia since 2002. The most commonly used drugs are those that stop the breakdown of acetylcholine, a neurotransmitter that sends messages from one brain cell to the next. Those drugs can improve concentration, but they do not work against the underlying causes of dementia, partly because we still do not understand all the underlying causes. We see the breakdown of proteins, we see bits of proteins appearing in the brain and we see brain cells getting tangled up, but what exactly is causing all that? We need to upscale research to a totally game-changing level to understand the cause so that we can try to prevent and treat dementia. In Scotland in 2013, the Scottish Dementia Research Consortium was set up as an umbrella organisation to try to bring all such projects together. As well as laboratory research into the cause and treatment of dementia, research into a human rights approach to those living with dementia is critical in improving support and care.

We are also looking at adapting our health and care systems. As my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) mentioned, two years ago Scotland published a national strategy for dementia, which is the country’s third such strategy; the first was in 2010. This one will focus on the whole pathway, from providing post-diagnostic support right through to end of life, and including community co-ordinators.

Dementia is the disease that our generation fears. My grandmother feared tuberculosis—people did not even name it; they called it “consumption”—and the people I looked after as a surgeon feared cancer. What many of us now fear is losing ourself, as we have heard described so graphically this morning, or losing the person we have loved all our adult life.

Providing social care is critical for those living with dementia and for their families. In Scotland, we have spent more on social care, which allows us to provide free personal care. That means that if someone can be supported at home to live with independence and dignity, it will not cost them or their family. Since Frank’s law came into effect in Scotland just two months ago, that has also applied to those under the age of 65. The care they receive is thus related to their illness and particular needs, without a bizarre cut-off at 65 that prevents a 64-year-old from receiving the care that they require.

The problem is that we are struggling to recruit people as carers, whether in care homes or in home care. Most people want to be cared for in their own home, but it is very labour-intensive. Some aspects of the situation are being made worse by Brexit. In parts of Scotland, such as the highlands, 30% of carers are from Europe, so there will be an existential problem for care services. We also need to turn caring into a proper professional career, with training, career development and a decent salary that rewards carers for the very difficult job that they do.

It is critical that we support a person with dementia along their entire journey. All we have to do is to sit in this Chamber and imagine ourselves in that clinic, getting that diagnosis, and then going home and finding that there is nothing—no information, no support and no one to answer questions. The integration agenda, which is further down the line in Scotland, is linking things up. We have linked our NHS back into integration since devolution, but integrating healthcare and social care is a lot harder; social care is much more fragmented, because it is provided by multiple private companies.

We have multiple projects going on in Scotland that are often recognised through Scotland’s dementia awards. My local health board has won one such award for its “Bridging the gap” project, which provides a dementia support adviser to liaise between hospital, community and family along the patient’s journey. In Wishaw, there is a theatre buddy scheme, so that if someone with dementia requires surgery, their buddy—they could be a worker or a relative—is there at the last moment before the operation and when the patient wakes up. One project that I particularly like is the provision of assistance dogs that have been trained by prisoners in Castle Huntly, which involves a double win: the prisoners are proud that they are helping someone in the community, and those living with dementia have assistance dogs.

However, for those who are living with dementia now, the most important thing is to make them feel welcome and included in the communities that we live in. In 2016, I was lucky enough to be invited to speak at the launch of Dementia Friendly Prestwick, which is led by a very impressive team, particularly Julie and Lorna, who are leading lights within it. I had not done any of the work required to set it up; I was just asked to give a speech at the launch. However, I was inspired by that launch to set up Dementia Friendly Troon and Villages, Troon being the community that I live in.

In Prestwick, a relaxed cinema has been running for three years. There are subtitles, the cinema is free, it is not as dark as most cinemas, they serve home-baked food and they have even had a local potter make double-handed cups. The baking is all done by Berelands House, one of our local nursing homes. The cinema was a finalist in the Scottish Dementia Awards, and the sound and screen are of really high quality; I went to watch one of the movies myself. That service is provided by Friends of the Broadway, the Broadway being an old cinema in Prestwick.

In Troon, we have relaxed golf and an allotment, which is supported by other gardeners. We started by asking, “Why do we love living in Ayrshire, and how do we help people to hang on to that for as long as possible?”

Jim Shannon

First, I apologise for not being here at the start of the debate; I had a meeting with the Turkish ambassador, so I just could not be here earlier. Does the hon. Lady agree that greater support should be provided for those living with dementia to enable family members and other close relatives to take care of their loved ones—that is really important—for as long as possible before putting them into care facilities?

Philippa Whitford

I absolutely agree; care should be provided in the home, if at all possible. That is where we would all want to be. The hon. Member for Ayr, Carrick and Cumnock (Bill Grant) mentioned the hotel room that uses colour as well as technology to make it easier for a person with dementia to stay in it, as well as making it easier for their carer to be there.

Guided walks are provided in Troon. Troon promenade is being redesigned to make it easier to move around on, and Troon is part of Cycling Without Age, which provides cycle rides along the promenade on trishaws every Sunday afternoon. Staff at our local airport, Prestwick, have received the training to make it a dementia-friendly airport. That all depends on Alzheimer Scotland, which provides training to staff at the airport and at other, smaller businesses, such as hairdressers and cafés.

We are the ones who have to make the change. All we are asked to do is be patient, rather than tutting behind someone in a supermarket. In our area, we have managed to get two supermarkets to provide relaxed lanes where people will not be rushed, but will be invited and chatted to as they come through. Let us all be less hectic, and let us make everyone feel welcome in our communities.