County Derry family set to take part in Alzheimer's Society Memory Walk in memory of beloved mum

On Saturday 23 September, Alan Bayles and his wife Monica who live in Castledawson, near Magherafelt, will be taking part at the Alzheimer’s Society Memory Walk at Ormeau Park in Memory of Alan's beloved mum, Madge.

When Alan Bayles moved to Northern Ireland in 2006, his mum Marjorie, was welcomed with open arms by Alan’s wife, Monica and her wider family circle.

Known to her friends as Madge, she enjoyed visiting Northern Ireland and getting to know Alan’s in-laws and friends. Madge, who grew up in Co Durham, was a hard worker and held many roles in her life.

Madge was diagnosed with frontotemporal dementia (frontal lobe dementia) in September 2022. Within a short time, Madge lost 75% of her short-term memory, but it wasn’t until the end of February 2023 that her condition really started to deteriorate rapidly.

Alan’s brother David was Madge’s main carer until she moved into a care home.

Alan explains the impact her illness had on her and the family: “My brother had so many hurdles to overcome. He slept with one ear open for months in case she got up and fell.

"Her mobility was badly affected, and the layout of the house wasn’t suitable for the care equipment she eventually needed.

“It took a full hour in the morning just to get her up out of bed and needed two people to lift her. David was very tired, was still working, although his employers were very good and he was able to work from home.

"He was also having to deal with all the admin like sorting out power of attorney and dealing with the bank etc. My wife and I did some respite care for two weeks to enable David to get away for a break and it was very draining as her condition deteriorated even during that short period of time.

“During March and April her condition deteriorated even further to the point where it not only affected her speech, but also her coordination and physical ability, making it impossible to feed, change or bathe herself without assistance.

"By the middle of April, things became so bad that David was forced to make the heart wrenching decision to admit mum into a Care Home, so that she could receive the care she deserved.

“Sadly, six weeks after being admitted, her condition deteriorated even further and she lost the ability to swallow. The decision was taken to withdraw her medication, food and liquids and she was commenced on end-of-life care.

"My mum fought bravely but she passed away on June 2nd with my brother holding her hand as she took her final breath."

 “We’ll be walking the Belfast Memory Walk at Ormeau Park to help raise money for research, in the hope that we can live in a world where dementia no longer devastates lives.”

A recent Alzheimer’s Society survey of unpaid current and former carers of people with dementia reveals that family and friends are the backbone of their support.

Four out of five (85%) carers in Northern Ireland classed themselves as primary carers, taking on the majority of caring responsibilities for their loved one.

Spending on average four working days a week (26.7 hours) providing essential practical and emotional support, the impact of unpaid caring duties comes at a price, with a quarter going as far to say they feel they have lost their identity (20%).

Alzheimer’s Society is encouraging people to sign up to a Memory Walk, which sees thousands of people walk for, or in memory of, a loved one with dementia. Funds raised will go towards vital campaigning efforts and support services desperately needed by people who have been devastated by dementia, including carers.

Alzheimer’s Society is also calling on the Government to take clear action to introduce a sustainable funding model, which pools the risk of care costs to provide people living with dementia with easy and timely access to personalised care.

Alzheimer’s Society is campaigning for better recognition of unpaid carers, coupled with improved dementia-specific support and breaks.

The survey revealed the isolation felt by unpaid carers of people living with dementia. A quarter revealed they lost friends (23%) and lacked frequent social contact with others (29%), saying that just one regular phone call from family or friends would have helped them cope (19%). Three in 10 also said they didn’t have anyone they felt they could go to for help (31%).

Around half (48%) surveyed have had to juggle caring duties with working full time, with one in six (17%) forced to reduce working hours.

Caring duties have also taken people away from their family and homes, with a fifth of respondents who have, or are currently, staying the night at least once a week (20%), spending less time with their partner or spouse (30%). Over two-fifths said their caring duties put a strain on their relationship (42%).

Alzheimer’s Society Northern Ireland Country Manager Barry Smyth said: “There are so many family members and friends providing care around-the-clock to keep their loved ones tethered to the world. This vital care can be incredibly rewarding but comes at a cost – often coping with changes to behaviour and carrying out daily tasks many of us take for granted.

“By signing up to one of our Memory Walks, we can continue to provide help and hope to everyone who has been devastated by dementia. We see thousands of people, all connected by similar experiences, coming together, which is always incredible to witness. From the buzz of the crowd to the hug of a stranger who gets it - whatever you feel on the day, you won't be alone.”

East Derry MLA Claire Sugden has said the toll taken on unpaid carers caring for a loved one with dementia has been laid bare by the latest report by the Alzheimer’s Society.

Ms Sugden said: “The responsibilities these carers take on through love and compassion can be all-consuming.

“Often these can be husbands or wives who are themselves older and who may have health concerns of their own. They may also be children, siblings, grandchildren and friends.

“A quarter of those said that due to their role they felt they had lost their identity, while a similar number said they had lost friends as a result. Even more reported a lack of frequent social contact with others.

“The toll this responsibility takes on these unpaid carers is huge and clearly there is not enough support available to them. Nearly 30 per cent said there was no-one they felt they could turn to for help, while nearly half had to juggle caring with full-time work. Forty-three per cent said it put a strain on their relationship.

“It is clearly not just those being cared for that need support – carers do too. If there was more help available for dementia sufferers, this would relieve significant pressure on carers.

“It would improve their work life, their relationships, their social lives and their physical and mental well-being. They would not feel so alone.

“Our entire care system needs vital and comprehensive change – starting with an acknowledgement of the work unpaid carers do and the impossibility of the government to do this job without them, because they simply couldn’t afford it.

“Dementia is a cruel disease that affects loved-ones almost as much as it affects the sufferer. Things need to improve and they need to improve now.”

Currently, 1 in 10 of the population are providing unpaid care. With one in three people born today going on to develop dementia in their lifetime, Alzheimer's Society is concerned that the overwhelming impact of caring for someone with dementia will only be exacerbated without urgent action.

By taking part in the Memory Walk, Alzheimer’s Society can continue to provide help and hope to everyone living with dementia. 

Money raised will help the charity reach more people with its expert support services, fund crucial research to improve care and support carers, and continue campaigning for change to make sure dementia is a political priority.

The sponsored Memory Walks are free to sign up and are taking place across 24 locations this September and October.

To sign up to an Alzheimer’s Society Memory Walk, visit memorywalk.org.uk