Guest: Michelle Harris
Presenter: Wayne Bucklar
Guest Bio: Michelle joined Bethanie in 2008 in a Regional Leadership position before returning to a clinical role as a Dementia Consultant with the not-for-profit aged care and retirement living provider in December 2013. With a background in gerontology and roles in aged care nursing in the UK, Michelle re-trained in midwifery and moved to Australia in 1987, in partnership with the Royal College of Nursing Australia. Her fascination with ageing within different cultures and new technological advancements in the field of treatment, coupled with a determination that there must be better ways to provide aged care, brought her back into gerontology. Michelle has since completed a Masters in the subject at ECU. In addition to her work with Bethanie, Michelle works closely with Alzheimer’s Australia on research projects, including a current trial documenting the effects of available technology on stimulating patients’ memories.
Segment overview: In today’s Health Supplier Segment, we are joined by Michelle Harris the Dementia Specialist for the Bethanie Group. Bethanie offers the full continuum of service, from care in your home and social centres for seniors, to retirement villages, affordable housing and residential aged care across Perth and regional Western Australia. In her current role, Michelle works closely with people living with dementia across Bethanie’s network, including those at home, in residential care and in hospitals. One of the favourite aspects of her job is being able to change perceptions of ageing and aged care and she regularly participates in talks and events to raise awareness of dementia. Michelle believes that more emphasis needs to be placed on promoting a healthy and active lifestyle and also the support needed to care for people with dementia. She believes that each case is unique and finds it hugely satisfying to be able to help increase peoples’ quality of life through her work.
Health Professional Radio
Wayne Bucklar: You’re listening to Health Professional Radio with Wayne Bucklar. My guest today is Michelle Harris. Michelle is the dementia consultant with the Bethanie Group and is currently in Western Australia. Michelle welcome to Health Professional Radio.
Michelle Harris: Thank you, it’s lovely to talk to you.
W: Now Michelle just to put a bit of context around what we’re talking about, give us a bit of insight into the Bethanie group. What does it do and how big is it?
M: Yeah, well Bethanie is founded on Churches of Christ Ministry over 60 years ago but it’s now called “Bethanie.” And we are a not-for-profit organization that looks after retirement living, social housing and respite services in the home or community and residential of home in care from Geraldton in near Perth region right through to the Southwest in WA. So we probably have about three and a half thousand clients with about let’s say 1,600 staff and over 700 volunteers.
W: That’s a very big group.
M: Yes, it’s fabulous. It’s the independent living and retirement living I guess here is growing. But the fact that we’re seamless where you have like a constant opportunity to get access to stay at home if you age, with services right through the end of your life or you can have more and move into a residential service. But I think with the increased emphasis now on living well and consumer directive care, I can see a more increase in the population is looking more at services like us to look after you and support you to live autonomously but well despite any disability whether it’s a physical or cognitive disability from dementia.
W: Now speaking of dementia, that’s your area of expertise these days.
M: Yeah, that’s right. And we’ve just had an amazing 30 days with 22 events where we’ve actually been out talking to our community and general public, some are carers, staff, about our approach to dementia and how we want to bring people forward with being more dementia friendly. I think this is across the globe which we need to reduce this stigma and the message about dementia. And a lot of people still believe that dementia is an illness that can be cured or that it’s an illness where your life is over. And what we’re trying to do is just the same way people with physical disabilities are enabled to live well in the community – with education, with good care planning for the symptoms of distress. And also forward care planning, so we have forward plans for the future. And we’re looking at partnerships have been our key focus of our approach to care, because if the person that knows the person with the cognitive disability is the person that loves them the most that’s been with them in their life or friends if the family are no longer around. So we need to work together not independent of the family. Education, really important for the staff to be competent and confident enough so the general public can understand how to communicate and also talk about assessments of communication and what can work for people. Because everybody is different, that’s one of the miss that say everybody with Alzheimer’s disease has the same experience so everybody with vascular dementia has the same experience and that’s totally incorrect. Because every single person is unique and they’re still unique living with dementia. So the other part of the partnership and communication and the approach to care is well-being and we really know that there’s a huge emphasis at the moment in reducing psychotropic medication across the world because we know that the research has shown us that it’s not working, it’s not supporting people. It works while it’s in the person’s system and then when it wears off the person wakes up and feels as bad as it did before.
W: Uh huh.
M: So a pill, to some people for example with depression and dementia it can support and when we see with any infection or pain that’s really important that we look after those people well and make sure they get the right medication for that. But if we do all that and we still don’t give an approach that includes well-being then we’re actually causing ill-being. So if we got a few moments for me to talk about well-being?
W: Yeah, sure. It’s fascinating to hear you talk about it.
M: Thank you. Well well-being is something that fascinates me because being in the medical profession and seeing people over the years in and out of the doctor’s surgery, in and out of the hospital but if we focus on these elements of well-being. So I’m saying now that the person we’re looking after with dementia who has got no pain when we start, there’s no infection or delirium or depression, so all those things have been excluded. But if we approach the person where they are still connected to us, so to be connected we need to know a little bit about the person’s life history. So you’re speaking to me now today from the Philippines, so that’s significant in your life story, so wherever the person’s lived, worked and enjoyed life experience from the past, because we know that those memories from the past can often still be around.
W: Uh huh.
M: The short term ones, like what we had for breakfast this morning may not be there but the long term, if we can connect to what the person lived, how they lived, if we can promote their identity and give them a meaning in their days. So when you’re doing something for someone with dementia, including them, not doing everything, obviously people that are chair bound and bed bound with dementia, can often hold dog or cat or support somebody by touch or feel connected by music. If we help the person learn new things, so if the person is able to walk around but really what we call “apraxia” where people can’t sequence things, if we help start them off with something and connect patient and spend time. It might be making a cake, we use volunteers to things like these or working the garden or being part of a community just participating in a single group, even if they can’t read the words on the song sheet, the music may stimulate some memory of the words that are being sung in the music or just the connectedness of being with people around them. And then “autonomy” if we keep taken away everything, if we keep thinking that people with dementia have to be locked in a community where nobody can escape and we reduce their freedom and autonomy then we’re actually taking away their rights, their civil rights. And really there are GPS devices, there are communities at Bethanie that are secure but there’s lots and lots of garden and lots of areas to find occupation and the occupation can be in or outside. And learning new things we know that the brain cells even though many of them are deteriorating, there are still cells that regrow. So we know that when you challenge your brain and you learn something new and you do physical exercise then you’re actually supporting the person to live well. So if you look at that as a puzzle, I’ve got a picture, I can send you where I put all these in a puzzle and I say to staff and family “If you take away a piece of this puzzle, what do you get?” And often it’s ill-being and that’s usually “apathy,” so people are not interested in anything. Sadness and anger you know verbal anger, refusal of care and support, isolation or even complete hyper-anxiety, frustration and really feeling of disablement. People that feel this, feel that everything has been taken away from them so losing their memory and other people disables and by not approaching them with a well-being approach can actually make the dementia worse. So I’ve taken all these and looked to that and I’ve read lots of books and research, but I’ve been out and seen it and done it myself. And when I’ve asked the person who’s caring for someone with dementia, “What can your dad or your mom still do? Or what can your brother or your father do?” And that’s the focused work from there, yes we need to know what level of support they need but let’s focus on what they can still do and let’s celebrate that. Even if it’s something that seems no meaning to us like putting flowers in the vase or picking some heads off some flowers or just being the moment with them while enjoying laughter, a massage or music is actually giving a sense of well-being. And years and years ago, back in the UK I worked in, before I start nursing and midwifery I worked in nursing homes and I saw, I guess what I saw was a sense of ill-being because people were just around looking at each other, staring at each other, sadness, disablement, and yeah that’s not to me that’s not living, that’s dying in dementia.
M: And I’m talking, in my role about living in dementia, we’re all gonna die of something – none of us is immortal. So if I said to you you’ve got heart disease or lung disease well we’re still be focusing on what you can still do. And we’ll been maximizing that, not focusing on death and not doing anything. So but there is this miss you see that the person is not there or they’re quiet … they can read, but they can’t speak to me.
W: Uh huh.
W: But they can follow instructions but they can’t follow the instructions without prompts and support and symbols so even some things as simple as going to the toilet, a door that’s closed but if you open the door and they can see the toilet or there’s a picture on the door that shows a picture of a toilet, it can actually prompt. So during this month it’s been amazing, when we’ve spoken to people about it and they’ve tried it, I’ve got some really good results and feedback to me as they give people hope. And I think that’s important, I think any organization that predominantly has people over 65 and of course I must say dementia is not a normal part of aging but people over 65 and most over 85 has some elements of memory loss and cognitive decline just the same as any aging organ, your brain ages as well as your heart. But if we focus on wellbeing and if we say that every person is individual and no two people have the same experience, then we can actually provide … care… and people don’t understand this. So I’ve tried to put in a simple term because a lot of the newer scientists are working really hard and that’s wonderful to see that there’s gonna be some great changes and possibly we’ll find a cure. But while we’re waiting, while the world’s waiting we need to focus on building hope and promoting a dementia friendly environment.
W: It is a very positive view that you have Michelle.
M: Yeah. And I’m talking about it at the World Congress in November because I find again when I wrote my abstract for that, and lots and lots and lots of doom and gloom – that this has been tried and this has not worked. And I think there is still hope, just the same as when the guys in Perth found the cure for … with the antibiotics therapy. People were dying of that years ago when I was born so now that’s cured and preventable. So there are lots of articles and information online about preventing … maximize in brain health. One of them I recommend your listeners to look at is the Brain App from Alzheimer’s Australia. It’s 5 simple steps to maximize, you can download the app or you can just go online and look on Google and learn from the exercises that they’ve got. But also physical exercise, something as simple as gardening and doing the walk every day, moving the blood from your feet through your brain cells is so good, and often because motor skills decline for some people, so for example walking can be difficult, you can actually get a support from a physiotherapist. And at Bethanie there are lots of allied health professionals that work across the community and residential care as part of their package, depending on what level they get assessed. Those that are on a package we can support in many ways but through Medicare. But it’s really important that we support people to walk, we support people to eat well, and so things like swallowing problems we can actually modify diet to support people to eat and drink. Nutrition again without good nutrition your brain cells don’t survive. So yeah, it’s really important that we keep moving despite any disability as we know, but we know that the myths out there it’s all doom and gloom so let’s try and look at it in a different way and that’s what dementia awareness has been. And the other person I look at is the younger onset clients within 65 and under, that’s increasing but there’s also increasing awareness around supporting them and Dementia Alliance International and one of my colleagues Kate Swaffer lives with dementia and she’s a coach there of the organization. It’s a global network, I’m sure there be people there in the Philippines who know about it. Go online and look at it and be part of it, you have to be living with a diagnosis that dementia or supporting a family member but they give some great examples of people achieving and doing things, studying, learning new things, living and not being stigmatized and prescribed disengagement as we talked about, which often is what happens. You know go away and make ready for your end of your life well how helpful is that when that’s what gets told, that’s quite shocking really.
W: What do you think is the biggest misconceptions about dementia?
M: The person is not there, the person everybody has the same experience is totally not true. I’ve looked after people and family and clients over 35 years, at the end of life and they still know your voice and they still feel your touch and they still recognize elements. Even they may not look at you and know who you are, there are elements that you can jog memories and that’s so important. Never underestimate a person with dementia.
W: “Never underestimate,” seems like a good message to leave.
W: I hope that we can get some of our audience to dispel a little bit of that misconception today. Michelle thank you very much for joining us, it’s been a pleasure talking to you.
M: Any time. Thank you.
W: Your passion is so evident when you talk, and so it’s been a pleasure hearing that in your voice.
W: Thank you. Thank you so much.
M: I’ve been in conversation with Michelle Harris who’s dementia consultant with Bethanie Group. And if you’ve missed my conversation I do suggest to head off to our website we do have a transcript of it there. There’s also an audio archive on YouTube and on SoundCloud where you can find out more about Bethanie at www.bethanie.com.au or if you’re looking for that transcript it’s on the Health Professional Radio website at www.hpr.fm. My name is Wayne Bucklar, thanks for listening.