Fife teacher diagnosed with dementia at 53 urges people to focus on person they know and love

Irene Donaldson added her voice to a new Scottish Government campaign which aims to challenge the stigma surrounding dementia.

The former deputy head teacher from Kennoway said: “It’s so important to keep being yourself and doing the things you’ve always done together. Since my diagnosis, I have been able to continue leading an incredibly fulfilling life and a huge part of that is down to the people in my life creating a network for me that is supportive.”

Rethink Dementia was created in collaboration with a National Dementia Lived Experience panel, and emphasises the importance of maintaining relationships with those living with dementia. Research has shown that making this effort to stay in contact with individuals and include them in social activities can help alleviate symptoms of depression, agitation, sleep disturbance, anxiety and apathy that can often come with dementia.

Dementia affects an estimated 90,000 people in Scotland and 3,000 are under the age of 65.

Irene, was 53. A decade on she recalled how her memory changed, she’d forget things - bank cards, purses and house keys - missed appointments and her home became chaotic and messy.

Her family’s conversations to raise their concerns were dismissed, and the problems put down to the busy, stressful nature of her work - but the issue came to a head when it went wrong at school. She had no memory of being given a task, and when she went to file a document, she discovered she’d already done it. Her boss said she “knew something was wrong.”

Irene confided in her family who shared those concerns.That led to a GP appointment, referrals to a psychologist and neurologist, and a diagnosis of dementia.

She said: “The diagnosis was a bit of a surprise. My mum had lived with vascular dementia, and I could see no similarities between her difficulties and what I was experiencing. My mum had led a good life with dementia, thanks to her family and her close-knit group of friends.

“So on receiving my diagnosis I was quite positive. I believed my future would be the same but sadly this wasn’t the case and my life changed dramatically. The world around me didn’t treat me in the same way – it was a very challenging time.”

Her friends and close family members stood up and made the difference, and Irene thanks that social connection for helping her through the incredibly dark times. She was able to continue to live her life with some adjustments. “I can still do most of the things that I used to do before, I just do them slightly differently and need people to help me.”

Her daughter Lynn offered help at the hardest times reminding her of her strength and encouraging her to be positive and to look ahead with determination. She helped her use technology to manage her diary and encouraged her to see life beyond her lost career.

Her partner, Allan, has also played an important role, adjusting her home to suit her needs, including electronically controlled lights, de-cluttering the house so it’s easier to locate items and more recently building a ramp to their back garden.

Irene also noticed a lack of support available for those living with dementia.

“There was no support for people my age,” she said. “There were community groups with older people, but I wasn’t really interested in the sorts of activities these groups did. Also, my mum had attended groups, but she was collected by a taxi and returned home. She loved her clubs but had no means of sharing what she had done there. I did not want that for me.”

Irene was so fortunate to meet a group of like-minded people all living with a diagnosis of Early Onset Dementia and with the help of two very determined ladies they together formed a peer support group Striving Towards A New Day (STAND).

It is based on building social connection and engaging in peer support as well as taking part in cognitive activities. Through STAND Irene also takes part in activism work to help breakdown the stigma of living with dementia, regularly visiting schools to help children become dementia friends for people living with the condition.

She also believes physical activity helps her to be as well as she can be, and regularly visits her local gym to take part in classes or swimming, where instructors adapt the classes, where required.

“Staying active in any shape or form has helped me stay more connected and helps with my balance and coordination. Daily walks with my wee dog are an essential part of daily life and being outside is mood lifting and keeps me connected with my community.

“It’s so important to keep being yourself and doing the things you’ve always done together. > Since my diagnosis, I have been able to continue leading an incredibly fulfilling life and a huge part of that is down to the people in my life creating a network for me that is supportive.”