Dementia Action Week | Q&A with Jack, Chairman, Liverpool Dementia Action Alliance

This week marks Dementia Action Week (17 – 23 May 2021) – a national event led by Alzheimer’s Society which sees the public come together to improve the lives of people affected by dementia.

Dementia is a term used to describe a range of progressive conditions affecting the brain. There are over 850,000 people living with dementia in the UK today and of these, approximately 42,000 suffer with young onset dementia, which affects people under the age of 65.

It is estimated that the number of people living with the condition in the UK by 2025 will rise to over one million.

This is why we are committed to providing long-term support, care and housing for people with dementia now and in the future.

Coming up this week

Throughout the week, we’ll be hosting conversations with people on the frontline, who deal with dementia every day, as they share their experiences with us.

Today we talk to Jack, Chairman of the Liverpool Dementia Action Alliance Group, who explains how he supported his mum through dementia as well as other members of his family.

The Alliance Group is made up of several organisations, charities and businesses from across the Liverpool City region, including Onward. Through the group, we are able to better support people and families living with dementia.

In conversation with Jack..

What is your experience of dementia?

My Mum had Alzheimer’s for 6 years. She was living in the North of Scotland and to begin with, while my Dad was alive, it was manageable, even comical but it became much worse when he died and she couldn’t remember his illness or the funeral.

While she was living alone there were some scary times, like when she went for a walk through the snow at 3 in the morning and was found by the Police. Soon after she went to live in a care home near my sister, even further North. She had a good life there for quite a while but eventually the dementia progressed, and it became difficult for her to cope.

Mum moved in with my sister for her last several months and died there peacefully.

My sister and I had some lovely experiences with our Mum throughout her dementia, mixed in with the hard periods for her and for us. We knew nothing about dementia at the start and had lots of misconceptions, but we learned along the way with good advice and support from Alzheimer’s Scotland.

When I retired 10 years ago, I decided to do some voluntary work and trained with Alzheimer’s Society to become a Dementia Friends Champion. I started giving dementia awareness talks – my very first at Onwards’ sheltered housing scheme, Morley Court.

Since then I’ve met and made friends with many people living with dementia. My Brother-in-Law, a retired Surgeon Rear Admiral, developed dementia and died a few years ago. My Mother-in-Law now has Vascular Dementia following a Stroke just before Christmas.

What are the most challenging things about supporting someone/living with dementia?

For every person with dementia the experience will be different – the symptoms, the severity or the order of occurrence or the duration, and of course there are over 100 different types of dementia.

Also, for every family member living with or supporting someone with dementia, it will be different depending on their own nature, strengths and weaknesses and their relationship. So “one size” definitely doesn’t “fit all”.

But amongst the most common challenges might be:

  • coping with the uncertainty and variability of symptoms. It’s hard to plan for eventualities when so little can be predicted clearly
  • when the person with dementia doesn’t remember or recognise a close relative or friend, or mistakes them for someone else, perhaps from the past. This can be painful to accept but it has to be remembered that this is a common occurrence, not a reflection on their relationship and is not necessarily upsetting for the person with dementia
  • mood changes – frustration, paranoia, suspicion, aggression – can all be symptoms, triggered by difficult experiences. It helps if family carers can understand when it is “the dementia talking” and respond with calmness and patience
  • losing memories – whole decades of them, even – can mean living in a different reality as well as a different time period. That reality can be perfectly logical and believable to a person with dementia and may be their only stable connection to the world as they experience it. It is important for family carers not to question or disagree with those perceptions and beliefs, however strange, unless of course they are upsetting or dangerous

What changes can people make to help others live better with dementia?

What changes might be helpful will vary according to the progression of the dementia but it is good to try to preserve and maintain a person’s ability to live and function independently for as much as possible.

Within the home, it can be useful to put clear signs (perhaps with pictures) on room or cupboard doors to help find things or places. Dark coloured mats on floors can look like holes so they should be removed, and familiar photographs, picture books, TV programmes, films or music can help maintain connection to happy times and experiences.

Substitute simplicity for complexity wherever possible, ie. TV remote controls with very few buttons, and stay active, stay engaged, and get in touch with other people living with dementia for mutual support and advice.

What can Onward do to become even more dementia friendly?

Make sure that all of your staff – whatever their role – get good quality training or awareness opportunities so they can better recognise difficulties and they can respond appropriately.

Review all of your policies and procedures on a regular basis to ensure that they take account of the needs of people living with dementia and family carers, if necessary engaging with relevant agencies to assist and advise you.

Play an active part within your profession to disseminate understanding and best practice, and contribute to the work of local and regional dementia organisations and networks to support their drive to create dementia friendly communities.

What advice would you give to someone who thinks they, or a relative, may have early onset dementia or memory problems?

Do not be afraid to consider dementia – it is a disease like any other and nothing to be ashamed of or embarrassed by.

Do not delay. Early identification is important to ensure the best and most effective support. Consult your GP who is the starting point for diagnosis.

Do not feel isolated. Everyone who has dementia or is a family carer has started where you are. There are informal social groups where you can get advice and support.

Do not despair. There is help and there is hope. Many people are living good and full lives with dementia.

If you have been affected and need support, please call the Dementia Connect support line on 0333 150 3456 to speak with an expert adviser.

Alternatively, get involved on social media and join the conversation. Use #DementiaActionWeek #CureTheCareSystem and don’t forget to tag us!