This dedicated team is guiding Wexford people living with dementia diagnoses

One of just nine services of its kind in the country, the Wexford Memory Assessment and Support Service (WEXMASS) was formed in November of last year. Located in St John’s Hospital in Enniscorthy, this multi-disciplinary team of consultants, psychologists, dieticians, social workers, and occupational therapists, are all experts in their field and have been brought together to offer a comprehensive service for those diagnosed with Alzheimer’s or dementia.

nd that service begins with the actual diagnosis, with the tests and checks which determine whether an individual has dementia.

“Their GP will do a basic memory screen on them before they’re sent in, then we do various different memory screens on them ourselves,” explains advanced nurse practitioner Deirdre Wickham. “That gives us an overall assessment on their cognition and their function, we do scans and bloods to look for reversible causes, and then put all that information together and meet as a team to discuss the case.

“We talk about the patient and everyone on their team offers their analysis. At the start when they come in for memory assessment it’s explained that we are looking for signs of dementia, so they know from the start.”

Yet surprisingly, not every patients wants to know the outcome of those tests. Doctor Eithne Harkin is the person tasked with relaying that news to patients and their families and says some prefer to remain in the dark.

“I’m normally the one who says ‘you’ve got dementia/Alzheimer’s’, but occasionally people don’t want to know. I sometimes say to people ‘if I knew what was wrong with you, that you had a problem with your memory, would you want me to tell you?’ Some of them will say ‘no, I don’t want to know’.”

This, in itself, can create difficulties from a legal perspective, difficulties which both patient and family will have to address at some point in the post-diagnostic phase.

“One of the big things from our point of view is forward planning,” continues Dr Harkin. “It is one of those diseases that progresses over time so people are going to get worse, so we try very strongly to prompt people to think about wills, plan for a time when you can’t do certain things, and who you would want to help you (in that instance).

“The amount of people who don’t have a will made is astonishing. You meet 90-year-olds who think if they make a will they’re going to keel over and die.”

This is where social worker Sally Veal steps in, offering advice and guidance as decisions no-one wants to make are mulled over. 

“Things like funeral arrangements, where you’d like to be cared for if you can’t look after yourself,” she says when asked what kind of decisions they have to consider. “What we say is you’re making life simpler for those who are going to have to organise these things later on.”

Because ultimately, the diagnoses delivered by Dr Harkin are terminal. With no cure available those living with Alzheimer’s or dementia know it will eventually overcome them, but that doesn’t mean one’s life is over.

“I had someone in the clinic last week who was going on holiday to Morocco,” says Dr Harkin. “It’s a bit like having cancer or heart failure, they’re not great diagnoses to have but you have to get up every day and keep going.

“What I say to people diagnosed is ‘you’re no different now than you were half-an-hour ago when you didn’t know you had Alzheimer’s, you’re exactly the same person’, it advances in different people in different ways, some people stay on an even keel for 5-6 years.

“It is very gradual in most people, occasionally people will have certain diagnoses and it can be rapid but they really are the exception. Part of our role is , as well as helping the patient, is trying to help the family for what we think things are going to be like in two years, in five years. 

“Some of my patients have been coming to me for 10-12 years, it is difficult sometimes, there are people you have an attachment to, I’ve seen hundreds and hundreds of people with dementia and there are some of them I really feel for, you get a connection with them.”

In addition to the array of medical and emotional supports provided at WEXMASS is a desire to make that connection with patients, to be a source of support throughout the duration of their journey with dementia. Everybody who attends the clinic is offered post-diagnostic service and is linked in with other community organisations such as The Alzheimer’s Society of Ireland (ASI).

“What we say is nobody is discharged from the service, they will remain on our books and we will continue to review them,” says Sally. “Often, at the beginning, people don’t need a lot of input, it’s later on as problems come to light that they need more support.

“When they get the disclosure of this disease, it’s a lot of information to take on board so you can’t over-burden them,” adds Deirdre. 

While their sole focus is on supporting those living with dementia, the WEXMASS team is also cognisant of the next generation, of those who may eventually walk through their doors in the next ten to twenty years. Aside from the obvious contributory factors like alcohol and smoking, a good, healthy diet is considered of huge importance when combatting dementia.

“The science is there behind having a healthy diet, a Mediterranean diet, people in that part of the world are living a lot longer and healthier,” says senior dietician Aideen McGuinness. “Poor diet increases the rate at which problems might occur, so by intervening earlier and giving them positive messages we can help prevent later problems.”

But it goes beyond practical measures like alcohol and food .Like so many other clinics, the WEXMASS team has bore the brunt of Covid-19. 

“From the point of view of diagnosis and working out what’s wrong with people, if people are very depressed or withdrawn it can have an impact on your memory and how you function so people can look like they have dementia but they’re just socially isolated,” says Dr Harkin.

“There’s a huge chunk of people who haven’t got back to where they were before. Not because they’ve physically deteriorated or because they’ve got a new diagnosis; some of them were very frightened by Covid, we’re still seeing people who are living very restricted lives because they’re afraid, they’re really afraid.

“If you’ve got any type of memory impairment and you stay at home looking at four walls all day you’re going to deteriorate, but if you’re out and about, seeing your grandkids, going to school plays and all that it helps massively.”

As people live longer and more cases are diagnosed on a daily basis, so services like WEMASS will become of even more value to their local communities. And while the team does everything in its power to enable patients to live in their own home for as long as possible, sometimes this is not always a viable long-term plan. And for Dr Harkin this is an issue which needs to be addressed in the coming years. 

“If you can’t live at home the only option is long-term nursing care home, so it’s all or nothing; either at home with your family or in a nursing home. A lot of countries have developed assisted living, supported living, where you might be in a block of apartments and as a nation that’s one thing we’re going to have to look at.

“People don’t want to go into nursing homes, but if you say to them this is your apartment and someone will come in to you three times a day, meals provided, washing done, they might feel better about it.”

Currently one such facility exists in Co Wexford, at Grantstown Day Care where residents live independently in their own apartments. And, according to Sally, this is the prototype for the future.

“Grantstown is the one example in the county, they have supported housing, you can attend the day care, that model would be fantastic if it was rolled out.”

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