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[00:00:00]

Today with Claire Byrne on Radio One, covid-19 has had arguably the most severe impact on people in the over 70 age bracket, the same sector which predominantly is affected by dementia. It's been reported that those with dementia have experienced a significant deterioration in their symptoms throughout the period since the pandemic began. Well, I'm joined by Nora Owen, former justice minister on the line. And here in the studio, Bettina Léonard, head of advocacy and public affairs at the Alzheimer Society of Ireland.

[00:00:31]

You're both very welcome. We're going to start with you, Norman. Thank you for joining me today. And we know about your husband, Brian. He has dementia. Have you noticed much of a deterioration or a during the pandemic?

[00:00:44]

Well, Brian is is in in a nursing home now for some time. And there was a long period where I couldn't get any visits, obviously, during the early part of the corporate pandemic. And there is definitely a deterioration in him. And I would say in a lot of people with dementia, because the the you know, the fact that they can't meet people, the socializing has gone down even in nursing homes. They had to stop any of the activities that they were doing, you know, like art and music and that sort of thing.

[00:01:19]

So that that affects the people with dementia very much because that socializing keeps some of their capacity going and that has gone down. But I've also had calls from friends who are caring at home for people with dementia, and they've seen a huge deterioration in their in their loved ones.

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And obviously, you like everybody else who has a relative in a nursing home, you know, you haven't been able to have those visits. So how much contact did you have with Brian Noro for the last little while?

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Well, in more recent times, I've had more contact, but there was a long period from sort of middle of March. Brian's birthday is 10th of March. We had visits then and then I had a visit on the 12th. And then there was a long period where there was no visits right through until the nursing home very kindly did a couple of what they call partial visits where you were separated because at least you could see. But one of the difficulties with people with dementia, sometimes their speech capacity diminishes and that has definitely diminished in brain.

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And so if you're distant, if you're keeping your social distancing, you can't really talk very well and the person can't answer you and other things, you know, affect people that are walking. Abrines walking has gone down and I know that's happened with a lot of people see socializing and the the the kind of capacity to keep the brain moving is unfortunately affected by the lack of socializing. And the other thing there of course is that the day center is both the healthy ones and the private ones have all been closed for months and that has also reduced the socializing for people and of course, has been very difficult on the carers.

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Many of the carers are themselves in the older age category and it has been very difficult.

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Well, that's it. And they have to look after themselves to keep themselves safe.

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But when it comes to the daycare centers and the fact that they haven't been operating in the main, I mean, what do you know of the impact of that? Well, I know from where we started when I was here in Malahide, I know that the 10 people that were attending that they haven't been able to attend it for months now. And it means that they are not getting any outside stimulation really at all other than what the carer, their loved one other carer can do.

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There's also been a reduction in the availability of care from the Hajazi. I know of cases where people haven't had, you know, the idea that they might get every morning even to help people maybe get dressed and have a wash and have a shower. That has been reduced as well, because, of course, a lot of the carers are living in crowded accommodation and therefore might bring the risk of bringing covid into a household. So there's a whole lot of sort of things that have stopped and it nearly certainly clear, you know, from one day almost to the next.

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And that and so, you know, things like even quires have had to start leasing. And music is very important.

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When her own FORGET-ME-NOT choir, we know so well what's been happening had a wonderful.

[00:04:38]

Well, I have to say, it's incredible. Nora Walsh, our music director and all Horn who's who runs the choir we have been meeting on Zoome. I'm an absolute expert now. We are meeting on Zoome every Tuesday morning all through the pandemic, sometimes 80 or 90 of us on the tube. It can be a bit noisy and it can be a bit confusing at times, but it has been wonderful and we can see each other. And what I've noticed has been wonderful that members of the choir who do not have dementia have been helping, you know, some of their friends by bringing them to their house and setting up in their own house so that they can join in and zoom.

[00:05:19]

So there have been lots of activity where there are people can organise it, but it's the it's the face to face contact that's missing. And that's been very bad. And remember, we're waiting for the government now to set up the care commission that they promised, because there is what the pandemic has shown us is there's there's a need for a much more integrated system for people who have conditions like dementia and other disabilities that need to be examined.

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Nor will you put the right nor used to stay with us there on the line, because I want to bring in Tina Leonard, who's with us as well from the Alzheimer Society of Ireland. Tina, you feel that things have been worsening for people, for carers and those who have dementia and Alzheimer's as time passes?

[00:06:05]

Absolutely. Claire and Nora has described it so well. And I'm sorry to hear that Brian's health is just improving as well. But she has described it so well about that isolation, that lack of peer stimulation that you get in day centre, for example. So we have been measuring and gathering evidence since the end of March and at the end from people with dementia and carers through our our helpline, through our dimension Fyssas, that that were operating by phone and talking to people who used to attend our day services, because once they shut down, 40 of them shut down overnight, we began calling out to them and began remote services there.

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So we were asking them initially, you know, what their concerns were, what things were like. And they were worried. They were fearful and there was stress already. Symptoms of deterioration were showing, you know, back in April. And then as time progressed, we saw all of those worries deepen. You know, the frustration really deepened. And, you know, we started hearing stories of carers who are talking about a sense of of grief, a sense of powerlessness as they watched the health of their loved one deteriorate and without the adequate support that they really needed to deal with that or to do anything.

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And also exhaustion, I would imagine, because you're not having the the respite of the day care center.

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Absolutely. The day centre is really important for the person with with dementia. If it's if it's something that suits them, it is it works so well because it's about dementia, appropriate in dementia specific activities as something that gets the brain going, gets the social juices going, is really important for maintaining health and for the carers. You say it's also a break so somebody the person can get out and do things. Now that's gone. And then at the same time, you don't have visits maybe from families and neighbours.

[00:07:57]

All of that support structure has gone. And it came to a point then where are my colleagues at the Alzheimer's Centre? We're reporting that the calls they were making and the calls they were having with people went dark is how they described to the people really, really felt that things were just getting too tough. The impact of the social measures of are really having a detrimental impact on the health of those with dementia. And the health of carers and also those with dementia who don't understand what's happening, that's that's an added complication.

[00:08:29]

Yes.

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So we see, for example, people, somebody who might have been first on the bus in the morning, going to the day centre, being involved, being with people and getting energy and wellness from that. Now we're hearing of people being withdrawn, being depressed, not wanting to leave the house. People being confused. You know, as Tina Gates, who cares for her dad in the Irish Times, said yesterday, her dad asked, is there a war on, you know, this confusion?

[00:08:57]

Why aren't people calling around anymore? And for those people with earlier stage dementia who have a greater understanding, they're seeing deterioration. And that must have a terrible impact as well, because they know what can happen, you know, so it's distressing all around. And really it points to is the need for supports and services.

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Now, you've had guidelines, haven't you, from the government, a road map, if you like, to reopen some of those centres?

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Yes, we have. So because we understood very early on what the impact was, we advocated, you know, four months for for guidelines to reopen day services. We've we've we have our remote services helpline, family care, support, training, calling into alternative services, calling to to people who attend our day centres and so on. So all of that is ongoing and at least we're able to do that. But it's not enough because you need that interaction.

[00:09:47]

So two things with the guidelines for reopening day centres and came just about a month ago and we're working on those at the same time.

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We have we're delivering a new service the U.S. has agreed to approved called day centres, day care in home, where people who who were working in day centres are going out and doing activities with someone in the home.

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It's one to one. It's not the same as that as that social setting. But the issue with the day centres, Clare, is that of our day centres and we rent a lot, some of them. The physical space might just be one room. The guidelines mean you have to separate people out of people in different spaces. You have to have an isolation room and all of our structures can cope with that. So what we're planning for now is a phased opening.

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And what we really are seeing is that without further investment, without further support from the agency in the government, you know, how can we open all the centres so that they are covered, acceptable, so that they are the health and safety, so that a zero risk from a covered perspective from anybody attending. We need that infrastructural support. And you know, what I have to say is a pre covered with the HSC. We mapped all of the dementia specific services in Ireland and we found that each county didn't even have a minimum, not even a minimum in any county of appropriate services.

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And we also found that the majority, over 80 percent, were delivered by the Alzheimer Society. So that's why I'm focusing on our services. But now, as we come through covered, that minimum has gone down. You know what's left for them? Yeah, disgraceful, really.

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And nor I hear you agreeing with that because obviously your first hand experience of this.

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Yes. And one thing that struck me there, from what Jean has said, another aspect of loss for people with dementia has been the visits from grandchildren, for example, the children and people with dementia seem to bond very well and and understand each other very well. But I should say clear that the nursing homes, I mean, despite the awful tragedies that have happened and the many who have died, the nursing homes have been providing a wonderful service, even with reduced sort of social kind of activities.

[00:12:03]

And so I wouldn't want to say anything bad about them. Brian is having wonderful care and plenty plenty of staff, but it's the it's the people who avail of other services that are really suffering very hard. And also the worry that will drive more people to have to make a decision to put their loved ones into a nursing home. And I think that that's showing up that not because of the lack of availability of some of the other services to keep you out of the decisions.

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Yeah, it's a very, very difficult decision.

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And we're certainly seeing that Clare with Nora has said that a lot of people who would have attended our centres where assessing their situations now and many have transitioned to nursing home and and we've always known that people prefer to stay in their community, in their home where they have. But for that, you need choice, you need options, you need support, and you need those services.

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So you've outlined a really difficult situation. I'm sure people listening at home will identify with us. You know, many people would be listening to what you've described and how difficult it has been. So where can they get help today if they need it, if they're feeling, as you have outlined there, in a dark place?

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I think the most important thing to say is that even though there aren't enough services there, as much as we would like, there are some services and there are people that can support you, I would say. To contact the Alzheimer's Society helpline or to go on to our website, you can talk to one of our dementia advisors. We also have a nurse, one to one service, and that's very good for advice and support, both for the person with with dementia and the family care as well.

[00:13:38]

Online, we also run family care support groups, family care training, cafes and clubs. So there are some services there. Go to your GP as well and ask for his or her support. So don't stay at home on your own. You know that there are there is a lot of expertise out there.

[00:13:58]

Go to your community nurse and connect community health care team as well. Just ask everybody. But but definitely call our helpline and talk to trained people who will just might be a listening ear or could refer you to services.

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Do you have a number to hand there, Tina? Absolutely, Claire. It's one 800 three four one three four one. And that's open Monday to Saturday with people waiting to take your call.

[00:14:20]

Tina, thank you very much. Tina Léonard there from the Alzheimer Society of Ireland, and also Nora Owen, former justice minister, emailed today c.B at RTG, Dorothy.