'Onwards and upwards' - how Ballymoney dementia group is helping Pat spread her message to others

Pat Cullinan spoke out on International Women’s Day because some symptoms can be misdiagnosed as early menopause when they are, in fact, indicators of early onset dementia.

Born in Ballymena in 1960, Pat spent her childhood years attending school in the Yemen where her father was stationed as a soldier, with the family returning to Northern Ireland in 1967.

As an adult, Pat worked as a receptionist before getting married in 1981 and going on to have four children and she now has four ‘wonderful grandchildren’.

Her father was diagnosed with Parkinson’s Disease and Lewy Body Dementia, so Pat spent a number of years looking after and caring for him. It was this experience which helped Pat make the decision that, when he passed away, she would go into care work.

She worked in care homes with stroke victims or residents who might have been living with dementia and discovered she had a real passion for it.

She then moved on to become activity co-ordinator for people with dementia and other conditions. The highlight of her life was getting a job as the manager of a sheltered housing association in Ballymena, living on-site with 36 residents, and she felt her previous work experience had prepared her well for this role.

Pat then had to retire on the grounds of ill health in 2015. Pat found she had been ill with various symptoms and ailments and said that the period before her official diagnosis was the worst for her, “the not knowing”.

“After getting my diagnosis of Parkinson’s Disease with Lewy Body Dementia on the same day in 2023, I felt my life was over and kept asking myself ‘What is left for me to do? What can I achieve now? Is this it?’

“Thankfully, my local Dementia NI Empowerment Group gave me hope and a sense of purpose. I feel I have been given my voice back. I can talk openly, I’m heard and understood.”

Pat’s local Dementia NI Empowerment Group is in Ballymoney, and, as with all Dementia NI’s groups across Northern Ireland, allows for a small gathering of about eight members to come together and support each other on their journey with a dementia diagnosis.

The groups provide information regarding resources, signposting, or additional support available, whether locally, regionally or NI-wide, while the Facilitators often invite guest speakers from other relevant organisations. The group provides a safe place to meet others who are in the same boat, somewhere they can talk freely with no judgement.

Always an active and healthy person, Pat believes that keeping fit and healthy has slowed down the progression of her dementia, and releases endorphins that provide a feelgood factor and help her maintain a positive outlook on life.

“I have always enjoyed exercising, doing yoga at home, walking, swimming, playing table tennis and dancing in my kitchen when no-one is watching. So, when I got my dementia diagnosis, I joined a Pilates class and I recently joined a local community choir too!”

Pat would encourage everyone to keep as active as they can, to take up a sport or exercise they used to enjoy or find something completely new to try.

She said that, that through her various activities, she has a better social life than she ever had with all the new people she is meeting.

This is the same for her fellow Dementia NI members in her Empowerment Group.

“We have all become such good friends, and each member brings something different to the group, and it has truly brought out the best in all of us.

"These groups empower us to achieve more than we ever thought we could after a dementia diagnosis and personally, I’m more fulfilled today than I ever was in my life.”

Pat says her motto would be ‘onwards and upwards’ and she owes a lot of that to the support and encouragement she has received from everyone at Dementia NI, showing her that it is still possible to live well with a dementia diagnosis.

In the month of International Women’s Day, Pat is encouraging women of a certain age to be mindful of their health and their bodies. A common issue is that some symptoms can be misdiagnosed as early menopause when they are in fact indicators of early onset dementia.

“To any woman who might be reading this I would like to quote Helen Keller, who said that the bend in the road is not the end of the road, unless you fail to make the turn!

" I have been fortunate enough to accept the hand that I have been dealt and have found a new purpose in life through it.”

Empowerment Groups operate throughout Northern Ireland, providing a place for members to come together and offer peer support to each other. The groups provide opportunities to share experiences, and empower people with dementia to have a voice and remain active in their community.

Members say that these groups have been life changing following their diagnosis providing much needed hope and a renewed sense of purpose.

Dementia NI members campaign to bring about change and make things better for those living with dementia now and in the future. Their members share their lived experiences to raise awareness and help to challenge the stigma of dementia.

The members design and lead campaigns to bring about change and compel decision makers at every level to respect and respond to the voices of people living with dementia

To find our more about the work of Dementia NI, visit www.dementiani.org