Still Me: A compassionate guide to dementia care

Irish Examiner

4 days ago

ANYONE with a loved one living with dementia is likely to identify with the experiences expressed in the pages of Still Me — A Neuroscientist's Guide to Caring for Someone with Dementia. While its author, Dr Sabina Brennan, a neuroscientist and psychologist, is an experienced academic author, there is nothing academic about this book. Its emphasis is on clear, practical ways to help address the challenges that caregivers and their loved ones with dementia face.
'In the book, I wanted to say to people, just do what you can. Providing the best care doesn't mean you have to do it all.'
Brennan wrote the book for anyone caring in any capacity, regardless of whether the person is a full-time carer or whether their loved one is in residential care.
'If you put all your [energy] into caring for your relative, all the other aspects of your life are going to suffer. You have to earn a living. You can't let your job suffer because that feeds your family, pays your mortgage, and supports your future.'
For anyone experiencing overwhelm, the thought of addressing self-care needs can feel like an additional burden. 'It is very difficult to think clearly or even consider self-care when you're completely overwhelmed,' says Brennan, adding that 'one little change' can make a difference.
In addition to her experience professionally and academically, Brennan has personal experience of caring for her late mother, who had dementia. In her case, there was no progression of noticeable signs. She had symptoms of delirium and was diagnosed with a urinary tract infection.
Brennan explains that the delirium is caused by cytokines in the brain triggered by a build-up of infection. 'If you have pre-existing mild cognitive impairment, the delirium will accelerate it, that's what happened with mom.'
People can recover from delirium with no cognitive impairment, she says, if there is no underlying issue.
After her father died, Brennan's mother became very depressed. 'If someone has dementia and they're depressed, some of their cognitive symptoms can be a consequence of the depression rather than the dementia,' says Brennan.
The progression for her mother was fast: 'She literally went into hospital with a UTI and delirium and never came home.' After six months in hospital, her mother was transferred to a residential care home.
Brennan says she was not in a position to care for her mother full-time at home with the competing demands of work and family. While work was a financial necessity, she also says she knew she needed it for stimulation and wellbeing. She visited her mum during the week and, every weekend, she and her husband would bring her mum home with them.
Dr Sabina Brennan pictured at her home outside Shercock, Co. Cavan. Photo: Lorraine Teevan
She says her mother loved her husband, who was a tremendous support during this time.
Talking to a dementia sufferer about their condition is not always straightforward, and it varies according to the stage of dementia the person is at, says Brennan, though she is an advocate for choice
'My mom never knew she had dementia. I sensed that if I told her, I would not be able to take it back. I think it would have devastated her, and she was prone to depression.'
Brennan says that for people who recognise their symptoms early on, it's different and it's vital for them to plan for their care and manage financial and legal implications.
She highlights that as dementia progresses, a person will struggle to take in new information and acquire new knowledge.
Despite the progression of cognitive impairment, Brennan emphasises the importance of treating people with dementia as adults, and even if they become non-verbal, to include them in conversations about their care and wellbeing, to pick up on any physical or facial reactions that may give insight into their own preferences.
'Their emotional memory is not affected,' she says.
Brennan says the one thing people living with dementia don't lose is their sense of being an adult and she advocates for them to be treated with respect and included in decision-making where possible. 'We are all entitled to the same human rights. However, people don't seem to feel the need to uphold them in the same way for older people or for people with dementia. It's really important that we recognise that our human rights do not diminish with age or with disease.'
She espouses the benefits to caregivers of living in the moment and noticing the happy experiences they share with their loved one.
Recounting her own experience, she says, 'We would sing songs and we would dance. I could play music for mum. She used to love Val Doonican when I was a child. I played songs I knew she loved, and she would sing along'.
While her relationship with her mother was not without its challenges in her younger years, it entered a new phase when her mum developed dementia. 'It became a much more honest relationship, a much happier relationship. There was no baggage. There was no point in trying to discuss things that happened in the past.'
Dr Sabina Brennan pictured at her home outside Shercock, Co. Cavan. Photo: Lorraine Teevan
She advises family caregivers to focus on the present. 'Forget about the future that might have been. Dementia steals some of those very important things but it doesn't steal your ability to enjoy life in the moment. What things do we enjoy? What do we live for? To laugh, to love, to hug, to smell flowers, to feel the sun on your face.
'Arm yourself with the knowledge so you know what's going on, but then just focus on living.'
According to the HSE, an estimated 64,142 people are living with dementia in Ireland — a number set to triple by 2050. Brennan attributes this to the ageing population, but notes this trajectory could change if risk factors can be addressed.
'The key and really important thing to recognise is that 40% of all cases of Alzheimer's disease are attributable to 12 modifiable risk factors, which include midlife obesity and type 2 diabetes. Through treating people's obesity and their type 2 diabetes, through drugs like Ozempic, we may be able to eliminate a significant proportion of people from going on to develop dementia.
'Similarly, age-related hearing loss is one of the biggest risk factors. That risk is mitigated if you wear a hearing aid.'
Brennan says that people who have a parent with dementia often think they are predetermined to get the progressive brain disorder. She emphasises that addressing the modifiable risk factors can significantly mitigate the overall risk.
'Lifestyle choices run in families too, not just genetics. We've made huge progress in terms of health campaigns, getting people to look after their heart health and get their blood pressure tested, their hearing checked, and so on.'
Brennan's work experience includes work at Trinity College Dublin, where her research included examining the impact that caregiving has on spouses. She has also worked with the European Commission and British and Irish governments on longevity and brain health.
Still Me — A Neuroscientist's Guide to Caring for Someone with Dementia , Bloomsbury Publishing.
, Bloomsbury Publishing. The Alzheimer's Society of Ireland: alzheimer.ie
Headspace provides mental health supports: headspace.com
Aware offers a range of programmes, including stress reduction: aware.ie