Living with Dementia

Robert Courts Excerpts

Tuesday 25th June 2019 Westminster Hall

[Robert Courts (Witney) (Con)]

It is a great honour to serve under your chairmanship, Mr Paisley. Like other hon. Members, I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) for bringing this timely and critical debate to the Chamber. We all feel very strongly about the subject. Many hon. Members have experienced, and have spoken movingly about, the impact of dementia on their own family. I am one of those, too. I will always remember the effect that dementia had on my grandfather in his final years. “Strict but fair” is probably the phrase used to describe that generation—my grandfather was a Royal Air Force officer and a teacher. I therefore have had personal involvement and have a personal interest in this matter, as so many do, and it is of course an emotional matter for many of us.

I am also married, as I have told the House before, to a music therapist. Many of my wife’s clients live with dementia. Classically, one always thinks of such people as being over 65, but that is not always the case. Increasingly, as my wife tells me, people who are much younger are affected, and it is those people on whom I would like to focus my brief comments.

I am a Dementia Friends champion. Many hon. Members are Dementia Friends and I warmly encourage any who are not to become one because of the education that it provides. One of the key lines and key lessons that dementia friend champions ask people to take away is that not everybody who is old has dementia and not everybody who has dementia is old. Although it is rare for younger people to have dementia, it is not that rare. About 5% of people with dementia are under 65, which is about 42,000 people—a significant number. I always ask people to become Dementia Friends because of the extraordinarily positive message that comes from that programme.

We should say not that someone is suffering with dementia, but that they are living with dementia. I am glad to hear that everyone is using the correct phraseology today—I hope that I will continue to do so throughout my speech. Secondly, one can live well with dementia, and there are many things that we can do in our constituencies and public lives to ensure that everybody does so.

Young onset dementia—people under 65—is very difficult to diagnose. It is easily confused with stress or depression at that age, so the diagnosis is delayed. Even when someone is diagnosed, it is often hard to find care. Care is often fragmented and targeted at people who are over 65, which is welcome where it is but, as the Dementia Friends programme shows, it is important that care is targeted to the individual’s needs.

That is why we are grateful for the Alzheimer Society’s Side by Side programme. I am honoured that YoungDementia UK is based in Witney. Its director, Tessa Gutteridge, is my constituent. It is a wonderful programme that seeks to bring together appropriate care for people under 65 who are living with dementia. For example, a social event for people in their 70s or 80s is not ideal for someone in their 40s who is living with dementia. It is much better if they are with people of their own age. YoungDementia UK have joined Age UK Oxfordshire and Guideposts Trust to bring together that specialised expertise and provide appropriate care and a support service targeted towards those with young onset dementia across Oxfordshire. We would like to see that throughout the whole country, which I know the Minister will think about in due course.

I am grateful to the hon. Member for Oldham East and Saddleworth for mentioning the report we have launched. I will not go through it in detail because she has done so fully. I would like to deal with the issue of employment. Under the Equality Act 2010, dementia is a disability. That particularly impacts those 42,000 people under 65, who may well be working. Their challenge is unique because they may themselves be carers for parents or children, they may be holding down a full-time job and they may have a mortgage to pay. It is particularly difficult. There is a stigma, as we know, around telling an employer that one is living with dementia.

There are difficulties in ensuring that the reasonable adjustments that should be made are made. That may be due to a lack of awareness of rights—perhaps employers do not realise that they should be making those reasonable adjustments. However, they may not realise what adjustments can be made. That is why I will give another unashamed plug for the Dementia Friends programme, which explains to people how it feels to live with dementia and what reasonable adjustments can be made.

The Government have an important role to play, which is dealt with in the all-party parliamentary group on dementia report. I ask the Minister to consider asking the Department for Work and Pensions to revise its guidance to employers about their responsibilities to support people who are living with dementia. It can cover reasonable adjustments, information on the Access to Work programme, and how to support employees with dementia. There is much more to do before we can call ourselves a society that is truly dementia-friendly, but I know that together we can do it.