Alzheimer’s Awareness Month: Shifting the Age Experience [Interview][Transcript]

Stephanie_Erickson_Alzheimers_Awareness_MonthGuest: Stephanie Erickson
Presenter: Neal Howard
Guest Bio: Stephanie Erickson, Director of Erickson Resource Group, is a clinical social worker and Director and Founder of Erickson Resource Group based in Montreal, Quebec. She has over 20 years of experience as a geriatric social worker. She has worked with seniors living autonomously at home, placed in care facilities, at the hospital, and who are living with family.

Segment overview: In today’s Health Supplier Segment, Stephanie Erickson, MSW, LCSW, and author of the upcoming book, “Aging by Design”, talks about looking beyond dementia as a disease and caring for our loved ones as individuals.

Transcription

Health Professional Radio – Shifting Age Experience

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you so much for joining us today. The number of family caregivers has tripled since 1994. And about 65 Million Americans have served as well unpaid caregivers to those of us that are aging and maybe experiencing Alzheimer’s or other forms of dementia. Our guest in studio today is Stephanie Erickson, the author of upcoming book “Aging by design.” She’s a licensed Clinical Social Worker and Family Care Giving Expert. After earning her master’s degree in Social Work in 1995, she began working a family caregivers. Now that throughout her 20 years as a social worker she’s guided thousands of families through the complex process of making caregiving decisions. She’s here today to speak with us about some of the different aspects of caregiving. How are you doing this afternoon Stephanie?

Stephanie Erickson: I’m wonderful. Thank you Neal for having me.

N: Thank you so much for being here with us today. Sixty five Million or more Americans serving as unpaid caregivers, I mean it’s not necessarily about the pay when it comes to caring for your loved one when they’re experiencing the problems associated with dementia or Alzheimer’s. As a family caregiving expert, I guess when talking about dementia – saying that someone is suffering from dementia or they’ve got this malady – how much of caregiving is caring for the dementia? And how much is caring for the individual as a person who still deserves their dignity, and to be able to do some of the things and makes some of the decisions that they were so used to all their lives?

S: Well I think a hundred percent has to do with caring for the individual. I mean all of us have something that we’re struggling with at any age in our life. Having dementia typically in a later years of life brings along lots of symptoms that have absolutely their challenges and limits on people’s ability to do something. But there’s still lots of things that we can do and I think what’s important for the caregiver and important for the care recipient is to look at this in terms of the person who is there, who is capable, who has capacity and all care should be focused on that. I think if we can do that and reframe our interactions and our responsibilities in caring for somebody, I think it could make caregiver’s experience more fulfilling and less exhausting and frustrating.

N: I understand that. And as the Author of upcoming book “Aging by Design,” how do you suggest that we deal with the progression of dementia or Alzheimer’s as a person’s abilities begin to deteriorate? How do we transition from what we were doing 6 months ago to what we need to do now that their condition has worsen?

S: Yeah, there is a balance between planning for what deterioration could come, and making whatever necessary accommodations that you need to do in order to get ready for that progression. There is a balancing that and there is also a balancing of just being in a moment and caring for someone in that moment, in the way that they’re experiencing whatever it is that’s happening around them. There is a balance but I think that having conversations within our family much earlier on prior to anyone having any kind of signs or symptoms or difficulties, the more that we understand the type of care and support the person would want should they be faced with an illness like this or any other difficulties of aging – the family member knowing how we’re supposed to be caring for somebody will help us in those moments when care begins.

N: We hear a lot about preplanning our funeral arrangements for ourselves or parents or grandparents as for that matter. I’ve not heard a lot about preparing in advance for dementia. Obviously dementia would come before the end of life. I mean is this an industry just like prepaid funeral services? Is there an organization or are there companies who will help you to preplan for dementia as far as where the person would live, what type of equipment would be in the person’s home if they plan on staying home, or the caregiver plans on staying with them?

S: Yeah, that’s an interesting question. I don’t know if any one-stop-shop that does that. There are different professionals who might have discussions about it. So you might meet with the financial advisor who’s going to talk to you about how you can safeguard funds, should you need to pay for some type of care in the future, whether that be a resident or equipment or personnel in your home. You’ll have attorneys who will help you create a state planning to make sure that the legal documents are in place so that someone has access to those funds and have permission to represent you. So it’s kind of like different lanes that people are in and I think that if we don’t think about planning for dementia, I think people would be more open to planning. Because the term dementia is very scary for people and not everyone’s gonna have it. So I think it’s better if we look at aging as a journey and as an experience overtime and have very general discussions about health deterioration in a general sense, just so we can get an idea what we might need to do in terms of planning financially and such. And then over time get to the more specific layers of okay, so if I have dementia what kind of care and support would I want?

N: Okay. You run Erickson Resource Group – a clinical practice that is focused on elder care. Now in addition to that and also being an Author, you’re also the Host of your own radio program the “Caregiver Circle” which can be heard on WebTalkRadio. When you’re talking to you guest or your callers, what type of information can you give them when they have no clue and they just need to get started? What direction do you point them in to where you say “okay here is a starting point to get that information” and that well training that you need in order to take care of someone?

S: Well the show actually focuses on caregiving in a very holistic sense. So what I mean by that it’s a broad topic so a lot of my segments and my shows are focused on seniors and what we can provide. But there’s also other types of caregivers, those caring of people living with HIV, those caring for children with disabilities, those caring for military caregivers. So the show brings in experts from all types of caregiving and I take one specific very detailed aspect of caregiving. And then spend the time really analyzing and picking that apart and absolutely within every show resources are offered of where people can go to get information to help them.

N: You recently organized a show and in your free time, well the little bit of free time that I can see based on all that you do, you spend your free time on the flying trapeze. And you organized a show sort of a circus based on changing the way that we look at and talk about Alzheimer’s and dementia. Could you talk a little bit about that show?

S: Sure, it started with a personal experience. I have anxiety and for most of my life I would say that I suffer from anxiety. And I was very discouraged with that language and realizing what it was doing to my reality, when I say I suffer what I was doing was suffering and I was limiting myself. So when I started to just say I experienced anxiety, I started to challenge myself how can I live despite having anxiety and that’s when I took up the flying trapeze. So this show was about showing how terminology changes our experiences. And it can change them in positive and negative ways. So if we say for someone suffers from dementia, if we say that they are disabled, incapacitated, that makes us look at that experience in a very negative way. And so our relationships with people are more negative and the systems that follow are not needing the needs of people in a very positive and enlightened way. So we should no longer say ‘suffer from dementia,’ we should say somebody has dementia, these are their symptoms and this is also what they have within them that we can build upon to make their life enriched.

N: So when a caregiver is on their way to the facility or the home, rather than already having a negative mindset about what they’re about to be involved in – the care of dementia patient – rather than already having that negative mindset of I’m going to care for someone who is suffering. I’m going to care for someone who is disabled rather than enabled. The positive mindset goes a long way as soon as they walk in the door, they see the, as you say the entire situation and the individual in a totally different light.

S: Exactly. Because if I say “Oh my gosh my mom is suffering, she’s suffering, she’s suffering.” I’m gonna feel negative about it and I’m goanna be focused on the things that are uncomfortable for her. But if I look at her and say “My mom has dementia, this are the list of her symptoms and these are the ones that are uncomfortable. Let me find those ways that she’s still capable. All those residual capacities that are still there, let me focus on that and do what I can to enhance and then enrich those capacities. Then I’m no longer looking at her as suffering, I’m looking at her as living with dementia.”

N: You’ve been listening to Health Professional Radio, I’m your host Neal Howard. It’s been an absolute pleasure talking with Stephanie Erickson in studio today, Family Caregiving Expert. And she often speaks at caregiving and aging and Alzheimer’s conferences. And she’s been here today talking about how we can change the way that we look at and talk about certain diseases such as Alzheimer’s, dementia, among just a few. It’s been great having you here with us today Stephanie.

S: Thank you so much Neal.

N: Thank you. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.

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