Living with Dementia

Holly Lynch Excerpts

Tuesday 25th June 2019 Westminster Hall

[Holly Lynch (Halifax) (Lab)]

As always, Mr Paisley, it is a pleasure to serve under your chairmanship. I join colleagues in paying tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for her leadership and for the compassion she shows in everything she does. I am a Dementia Friend because of her, having attended one of her workshops here in Westminster in 2016. I have since become a dementia champion and was asked by the Alzheimer’s Society to run its workshop for Dementia Friends at the 2016 Labour party conference to 80 colleagues and members, which was quite a challenge for my first workshop. I am incredibly proud to have played a very small role in training some of the UK’s 2.8 million Dementia Friends and sending them out into their communities to make them that bit more dementia-friendly. Once again, I pay tribute to my hon. Friend for her role in that.

This debate gives us an opportunity to evaluate where we are against the aspirations set out in the Government’s Challenge on Dementia 2020, but also to shine a spotlight on some of the good work that is being done at a grassroots level—not least in Halifax, thanks to some truly inspirational and passionate volunteers. As we have heard time and again, 850,000 people are living with dementia in the UK, a figure that is expected to double by 2040. One in 14 over-65s is living with dementia. If that is not an incentive to us all to do everything we can while we are able and empowered to do so, I do not know what is.

I recently wrote to older people in the Sowerby Bridge area of Halifax on behalf of the campaign to make Sowerby Bridge a dementia-friendly town, and invited them to a day of action to learn more and see the support available in their area. That campaign is driven by Shabir Hussain of Bluebird Care in Calderdale, who is a thoroughly committed community activist, along with Chris and June Harvey, who are truly dementia champions, and who run the wonderful Memory Lane Café for people with dementia and their carers. With their trustees and volunteers, Chris and June run pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, with a dementia-friendly programme of games and crafts, information and support, cakes, music and conversation. Some 540,000 people in England alone care for those with dementia, and estimates suggest that one in three of us will be involved in caring for someone with dementia at some time in our lives, so a dementia-friendly environment that offers a thoroughly positive experience for all those involved in living well with dementia makes a massive difference to the regular attenders.

We also have a young onset dementia and Alzheimer’s group, or YODA for short, which was set up by Julie Hayden and provides support for younger people with dementia and for their carers and families. As we have heard, it is often overlooked that 42,000 people of working age live with dementia. Their requirements can be quite different. People diagnosed with dementia at that time of life usually present between the ages of 30 and 65 and are most likely in work, potentially with dependent children, older parents to care for or financial commitments such as a mortgage to consider. For that group, as other hon. Members have said, living well requires a different support package from that required for over-65s.

I would be remiss not to highlight the work of Inspector Neil Taylor of West Yorkshire police, who is a dementia champion and the chair of Dementia Friendly Todmorden. He has gone over and above in promoting best practice within West Yorkshire police and his local community—all credit to him. West Yorkshire police have introduced the Herbert protocol, named after George Herbert, a veteran of the Normandy landings who lived with dementia. The police and other agencies encourage family and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The form includes vital details such as medication required, mobile numbers and places previously located, along with a recent photograph. In the event of a loved one going missing, the form can be handed quickly to the police to speed up the search and assist in supporting that person, who may be lost and confused when they are located. I recommend that all forces adopt such a protocol as soon as possible.

We are blessed with dedicated volunteers who have made Calderdale a better place to live with dementia, but what if Shabir, Chris and June, Julie, Neil and others like them were not there? The environment might be quite different without their leadership. How can we ensure that such work is supported and replicated elsewhere?

I give credit where it is due. David Cameron’s Government launched the dementia challenge in 2012, which sought to create dementia-friendly communities, with work led by the Alzheimer’s Society; drive improvements in health and care; and improve research, with a commitment that funding for dementia research be doubled to more than £66 million by 2015. Under Dementia Challenge 2020, as the programme was called when it relaunched in 2015, the Government committed to investing more than £300 million in dementia research and medical innovation.

It has been estimated that dementia costs the UK economy £23 billion a year, which is more than the costs of cancer, heart disease or stroke. With the numbers of people living with dementia expected to double by 2040, predicted costs are expected to treble alongside that increase. For anyone not yet won over by the human arguments for committing to research for dementia, the economic arguments speak for themselves.

To be fair to David Cameron, I believe that he understood the issue. I hope the Minister can assure us that she will seek to make it a continuing priority for the incoming Prime Minister. However, there are still areas in which I would like to see things standardised across the UK to support people, particularly younger people, who live with dementia, as well as their families and carers. To have a dementia diagnosis in the workplace, with dependants or financial commitments, must be incredibly daunting, but with a renewed focus on that group, and with changes to our understanding of the support that those demographics need to live well, we can make a positive difference. I thank the APPG on dementia for its report “Hidden No More: Dementia and disability”, which calls, quite simply, for

“equality, non-discrimination, participation and inclusion.”

I wholeheartedly endorse those aims.

[Ian Paisley (in the Chair)]

I thank colleagues for their immensely good self-imposed discipline, which will allow the Opposition spokespersons and the Minister 10 minutes each to speak.