Many of us know absolutely nothing about dementia. We compiled the following pointers to help everyone understand the basics. We also spoke to Michael and his daughter, who shared their experiences with dementia, to help put the facts into context.

 

Michael was born in Roundhay - on the kitchen table!  After attending school and college in Leeds and obtaining a degree in engineering, he became an army officer and professional engineer, working in the UK and abroad. Michael married in 1964 and the couple started a family. Michael’s wife died some years ago and he was recently diagnosed with dementia. He moved from Cheshire back to Leeds to be nearer to his daughter. He lives in his own flat in an extra-care residential development in north Leeds. We asked Michael to reflect on the basic facts and relate them to his own experience.

 

1. Dementia is not a natural part of ageing.

“I used to have memory problems,” says Michael. “But I just thought I had to make do and get on with things. It’s just old age.” He thought his forgetfulness was inevitable. Then he and his children recognised some strange aspects of memory loss that bothered him and he was getting muddled with everyday life. “It didn’t feel right,” says his daughter. Michael wanted to know what was causing these symptoms. It was a shock to have it diagnosed as dementia but he is glad that he went to the doctor when he did. “It was caught at the right time,” he says.

 

2. Dementia is caused by diseases of the brain.

Dementia is an umbrella term which encompasses many different diseases, one of which is Alzheimer’s Disease – this is what Michael has been diagnosed with. Like most people, he thought that the words “dementia” and “Alzheimer’s” were interchangeable and have exactly the same meaning.

 

3. Dementia is not just about losing your memory.

Michael recalls details of his past life but he tends to forget recent happenings and the sequence of occurrences. Words and names “get stuck”: he knows what he wants to say and has an extensive vocabulary when he is on a roll with his conversation, but it’s hard to think of the word. One of Michael’s big concerns is his reading and writing. “I find it difficult to string a sentence together,” he says. He views his attempts at writing as “ridiculous”, and says the words veer up and down the page. Although he can decipher the words, he finds it difficult to connect them to make sense in complicated texts. Forms are a problem! Fortunately, Michael can read children’s stories to his young grandson who loves this interaction with his grandpa. But it’s not just verbal - Michael’s coordination, spatial awareness and balance is affected too – and he’s had to give up driving.

 

4. It is possible to live well with dementia.

Michael emphatically agrees. “Oh, yes!” he says. “I try and do as much as I can.” He likes to get out and about. “I go on a walk at least once a day,” he says. He has developed a regular route around the local tarn. Michael lives independently in his flat but takes his main meal in the bistro in the complex, enjoying companionship with other older residents. He loves to help people, especially those who are less physically able than himself. “I wish I could do more,” he confides. Michael is always keen to volunteer to help in whatever way he can.

His local Neighbourhood Network Scheme helps Michael to live well. He enjoys the community café, eating-out group and cuppa-and-company sessions. Michael enjoys outings and recently he suggested that a few of the older members took a trip out to the theatre. Family is important to him too: he also loves seeing a lot of his grandchildren. Michael has lots of other plans too. “I want to join a local Bowls club!” he says. Michael is the embodiment of the message that you can live well with dementia. He sees his life as a work in progress and makes continual adjustments to live the best he can. For example, he uses his phone calendar and has a whiteboard to help him remember appointments. “It’s in your own hands what you can do as long as you can do it “

 

5. There is more to a person than dementia.

Michael and his family know that he is still the same person despite his diagnosis. He is sanguine about his dementia, saying you just have to put up with it and make the best of life. Michael has retained his sense of humour and intelligent insight into his condition and limitations. He acknowledges that his dementia is part of his life, but it does not define him. He’s a rugby fan, he loves being active – and he’s always thinking of others.

Michael’s positive can-do and disciplined attitude survives, reflecting his military and professional background. His home is tastefully decorated with mementos of his family and domestic life. He is decidedly his own person – and long may that continue.

 

Advice

We asked Michael and his daughter for advice for people experiencing memory loss or receiving a diagnosis of dementia. Here’s a few things they said, with a few of our own ideas too.

• Seek medical advice as soon as possible.

• Take action while you are still able to make adjustments and make decisions for yourself.

• Acknowledge and accept a diagnosis of dementia. There is no point in being in denial.

• Find other people who are living with dementia.

• Retain as much independence as you can for as long as you can. Challenge yourself.

• Know if you need help, ask for help.

• Socialise with other people in as many ways as you can.

• Help other people as much as you are able.

 

Dementia Directory

 

Leeds City Council Dementia Site:

https://www.leeds.gov.uk/adult-social-care/dementia

Memory Support Service: 0113 231 1727

 

Carers Leeds:

0113 380 4300

 

Alzheimer’s Society Support Line:

0333 150 3456

 

Age UK Advice Line:

0800 678 1602.

 

Admiral Nurses Dementia Helpline:

0333 011 4311.