‘Dementia is just one part of who they are. My husband's underlying personality hasn't really changed'
The couple, now aged 69 and 71, are living with the difficulty of early-onset
Alzheimer's
as Gerry was diagnosed with it in 2017, when he was just 63.
'I first saw changes in Gerry about a year before his diagnosis,' says Nuala. 'I noticed a change in his mood, and in his outlook on things. He was repeating himself, and seemed less aware of what he was talking about and what he was saying. The changes were subtle, but they were there. At that stage I had lived with him for 30 years, and when you're with someone that long, you notice these things.
'He was diagnosed in 2017 and now, some days it can be difficult to get him out of bed. Although he washes and dresses himself, I have to remind him to change, and I leave everything out for him and remind him constantly to move on to the next thing – for example, if he puts something into the microwave, he will think that he has eaten, so I will have to remind him.
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'Mornings are busy generally, as he has several activities which I drive him to, and he loves walking our dog, Teddy, in the afternoon. He has the same route every day, and always ends up in the local cafe for a coffee, but, after that, the days can be long. Dementia brings many challenges, as anyone dealing with the condition will know and it is getting more stressful as Gerry's memory problems become more persistent.
'I have had my own medical issues over the past while, so it's very hard to keep up at times. It can be like Groundhog Day, every day, and the stress can be intense. I have wonderful friends, but I am very aware they have their own lives too.'
But despite the issues the Wicklow couple face on a daily basis, they have a strong relationship. Nuala says the most important thing for carers to do is to take any support offered, as some days are very difficult.
'We love each other, so it's very important to see the person beyond the condition,' she says. 'Dementia is just one part of who they are and Gerry's underlying personality hasn't really changed. He is very sociable, and loves being with other people. He is a very caring and kind person and is always looking out for others – he still has these characteristics.
'Of course, he might not realise that he has spoken to you about the same thing multiple times – but that's just something I have to accept, especially as what he says can be very wise. My advice to other carers is to talk, talk, talk – to whoever can offer help, information and support. I would encourage them to enrol in a carer's course, join support groups and get in touch with the
Alzheimer Society of Ireland
(ASI) to learn more about their services and supports.
'Gerry and I avail of the ASI's Day Care at Home Service and, twice a week, Lorna from the ASI comes to spend time with Gerry. They have the chats, play board games, go for walks with Teddy or grab a coffee. This gives me a break and takes away some of my stress; it makes a huge difference to our lives.'
Women over the age of 60 are twice as likely to develop Alzheimer's disease as they are to develop breast cancer during their lifetime
—
Report by Alzheimer's Research UK
Gerry and Nuala became members of the
Irish Dementia Working Group
and the Dementia Carers Campaign Network, advocacy groups that help to raise awareness of issues affecting people and families coping with dementia in Ireland. 'Our advocacy work has been incredibly rewarding – knowing that we are helping to ensure that the voices of people with dementia and their carers and families are heard,' says Nuala. 'Connecting with others who are in similar situations – whether they are caring for a loved one with dementia or living with the condition themselves – it gives you a sense of comfort and strength. Dementia affects so many families across the country, and Gerry and I want people like us to know that they are not alone.
'We need to stand back and admit we are only human and can only take so much – and we need huge supports to keep going day to day.'
Gerry and Nuala Paley. Photograph: Karen Morgan
Although dementia affects people of varying ages, Dr Laura O'Philbin, research and policy manager at the Alzheimer Society of Ireland says that women are much more likely to be affected by the condition, as figures show that women account for almost two-thirds of people living with dementia.
'A report by Alzheimer's Research UK published in 2022 highlighted that women over the age of 60 were twice as likely to develop Alzheimer's disease as they are to develop breast cancer during their lifetime,' she says. 'Women also play a significant role in caregiving, with approximately two-thirds of primary caregivers for people with dementia being female – this is supported by Irish census data. And as well as more often providing care, women tend to provide more intense levels of care and, in some cases, experience greater stigma and reduced social support compared to male caregivers.'
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The year of hope: 'Exciting' advances achieved in search to reverse Alzheimer's disease
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In addition to this, Dr O'Philbin says women living with dementia may encounter unique challenges, including the compounded effects of ageism, sexism and ableism. 'These intersecting stigmas can result in social isolation and barriers to care. Traditional gender roles further complicate matters, as women are often seen as caregivers rather than care recipients, which can heighten feelings of guilt or inadequacy following a dementia diagnosis.
'This is a double-edged sword because, at the same time, the societal expectation for women to take on caregiving responsibilities, combined with limited recognition of caregiving as a valued role, has contributed to challenges for male caregivers. Some men report stigma which can lead to a reluctance in asking for or accepting help.'
About Dementia
According to the Alzheimer Society of Ireland, there are an estimated 64,000 people with dementia in Ireland.
The number of people with the condition is expected to reach 150,000 by 2045.
Globally, women account for about two-thirds of people living with dementia. This disparity is likely due to a combination of biological, genetic and social factors.
Ongoing research suggests that hormonal changes post-menopause and genetic risk factors, such as the APOE4 gene, contribute to the higher prevalence of dementia among women.
Although men and women are equally likely to carry the APOE4 gene, its association with dementia risk appears stronger in women, though the underlying reasons for this difference are not fully understood. Women's longer life expectancy also increases their likelihood of developing age-related conditions such as dementia.
Often, the early signs of dementia may be difficult to detect. Some people experience changes in their short-term memory early on, for others changes to mood or to language may be the early signs. Each person's experience with dementia is unique.
In general, early signs and symptoms can include:
Memory loss, particularly for recent events
Problems with language; difficulty finding the right word
Changes in mood and behaviour
Becoming confused in familiar surroundings or situations
Difficulty in following conversations, TV programmes or reading
Difficulty managing money and everyday tasks
Difficulty solving problems or doing puzzles
Loss of interest in hobbies and pastimes, lack of initiative to start something or go somewhere.
Repeating a question or story several times without realising
If you are experiencing any of these symptoms, it is advisable to make an appointment with your GP to discuss or contact the ASI's National and Free Confidential Helpline at 1800-341341 or
alzheimer.ie
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