Griswold Home Care hosted a national webinar workshop on Thursday, November 21st from 4-5 PM EST entitled, Alzheimer’s Innovation 2013 – A National Plan to Fight Back.
Join us as Griswold Home Care’s Christopher Kelly M.Ed., Director of Learning & Development and dedicated family caregivers share the latest research and innovative best practices in Alzheimer’s Disease treatment and support. You will also benefit from a review of the National Alzheimer’s Project Act (NAPA) and a 2013 update to the National Alzheimer’s Plan.
The webinar workshop features four steps:
Step 1: Learn about the devastating impact of Alzheimer’s Disease.
Step 2: Understand the key elements of the National Alzheimer’s Plan and learn what you can do to support the plan.
Step 3: Hear real stories and practical tips from family caregivers who have supported clients with Alzheimer’s Disease.
Step 4: Access a Fight Alzheimer’s Disease Toolkit that offers innovative tools, guidelines and resources for fighting Alzheimer’s Disease. Family caregivers, professional caregivers, healthcare providers, and those generally interested in learning more about Alzheimer’s Disease are encouraged to view this webinar.
-[Derek] Welcome to the Solution Series webinar titled, “Alzheimer’s Disease Innovation 2013: A National Plan To Fight Back”. The Griswold Home Care Solution Series webinar program is a monthly workshop, designed to provide practical solutions to the fingertips of caregivers, families and healthcare professionals. One of the strongest components of the Solution Series webinar is learning from you. So we will be sharing information, have some great guest speakers for us today, we’re also looking to hear from you throughout the webinar. Um, first a few house keeping items, all the lines are currently muted. You will have several opportunities to ask questions throughout the webinar. I will explain how to do that through the go to webinar panel here shortly. We will also hold a formal, um, 10 to 15 minute question and answers session at the end of the webinar, where you can ask questions of our panelist today. Um, we always get the question normally, um, even 1 or 2 minutes into the webinar “How can I get these slides?” So we’ll address that right upfront, that this webinar is recorded, and the slides and recordings and it’s full transcription of the webinar will be available, typically 1 to 2 days after the webinar and will be emailed to all the webinar registrants. And about today’s topic, November is National Alzheimer’s Disease Awareness Month. I know, here at Griswold Homecare we have a big large group do the Alzheimer’s, walked down in Citizens Bank park, right around by the Philadelphia Phillies play, and I think this was their largest year ever. Last year I think there might have been maybe 2000 people, I think this year there was several, 8, 9, 10 thousand individuals walking. Um, the origin of National Alzheimer’s Disease Awareness Month dates back where Ronald Reagan actually officially designated this back in 1983 as the official month. And what we have here is a quote from current President Obama who also acknowledged this, um, month in his Proclamation in late October. And President Obama was quoted saying “During National Alzheimer’s Disease Awareness Month, we stand united in our commitment to improve care for Alzheimer’s patients, identify new therapies for the disease and support for all those lives who have been touched by this tragic ailment.” Ah, well, National Alzheimer’s Disease Awareness Month certainly is a , a primary, um, celebratory and advocacy month. November also is National Family Caregivers Month, and with that, we think those, those themes are very much tied together, and President Obama also acknowledged ah, a quote in his Proclamation as well saying: “Family members, friends, and neighbors devote countless hours to providing care to their relatives or loved ones. During National Family Caregivers Month, we recognize and thank the humble heroes who do so much to keep our families and communities strong.” So many of you on the phone lines today are our family caregivers and we also acknowledge and thank you as well, for all of the countless hours and support that you are providing. Our goals for today, very simple, we do have three goals: we wanna review the National Alzheimer’s Plan for 2013, and most importantly, we think that the big distinction between this webinar and others is we wanna share tools. We’re gonna um, talk about topics, but then we will demo tools that are out there, many of these tools take 8, 9, 10, 11 clicks to get through if you hit a website today. And what we’ve done is, we brought those to the fingertips and our presenters will be bringing those alive, to help you, um, manage with disease. We’ll also be sharing um, innovative non-medical Alzheimer’s treatment approaches, and through all of this empowering clients and their families, and professional caregivers to fight Alzheimer’s disease. And here to help us do just that um… Our first, um, presenter today is LindaBarbo, and we have a, um, just and I’ll start panel with who has a lot of experience with Alzheimer’s. Let me share a little about Linda’s background. She has a very strong connection with Alzheimer’s disease. She was a dedicated family caregiver for her father, who was diagnosed with Early Onset Alzheimer’s disease in 1998. Sadly, Linda’s father passed away from the disease in 2006. Linda has dedicated the last 13 years as an amazing advocate for The Alzheimer’s Association of the greaterDelaware Valley Chapter, and within that organization she has a lot of experience. Um, she’s beena support group facilitator for the adult children, um, Early Alzheimer’s disease support group which was, one of the first, if not the first support group for Early Onset Alzheimer’s in the country. She’s also long time public policy advocate and has conducted Day on the Hills for many years. Um, and as well has also participated in The Memory Walk and many fundraising community volunteer activities with the Association, in her years supporting Alzheimer’s Association. So, Linda, welcome to our webinar today!
- [Linda] Thank you, I’m excited to be here and to help out.
- [Derek] Absolutely. Our next panelist and host today is Chris Kelly. Chris Kelly is the director of Learning and Development at Griswold Home Care. Um, we’d like to say Chris is the, the architect of the Solution Series workshop. Um, in addition he leads all training and education at Grizwold Home Care. Um, in Chris’s previous life he was a VP of Health education, he’s been a Director of Education at the Alzheimer’s Association and managed multiple functions within assisted living facilities including those with Dementia units. Welcome to the webinar, Chris.
- [Chris] Great, thank you Derek! Good afternoon everyone! I can’t tell you how excited I am to be part of this really exciting webinar and topic. Um, spent a majority of my career as Derek said, working with clients and family caregivers, great people like Linda Barbo. And have always admired your courage and your wiliness to fight, which is really what our theme is about today. We always like to start our webinars with a recognition of our audience. Um, you know, we have four main segments that join our webinars which is really unique. Um, first of all I wanna recognize our healthcare providers, franchisees, company and office’s staff who’re out there every day supporting clients and family caregivers who are living with Alzheimer’s. The direct care workers, professional caregivers who are assisting with personal care which is a huge challenge. Um, family caregivers who are providing tireless support and care, like the people with Alzheimer’s disease, and um, probably most importantly clients who are living with Alzheimer’s disease. Um, the amazing courage and determination that you show, um, dealing with this disease every day is again, an inspiration. Um, if you’re new to Alzheimer’s disease, just received a diagnosis, some of the information that were about to share can cause anxiety.
Just remember that everybody experiences their condition differently and that we’re here to support you with that. We have a great activity that we call Frame Writing. On the screen here you can see, on the right hand side, the graphics. Through out the presentation, if you have any stories, tools, tips, recommendations to share, you can go right to your chat bar, you see here’s an orange icon with a white arrow, click on that the margin will come out and you can chat. Um, we’ll also ask specific question throughout the webinar, and this way learning is a two way process, and we are learning from you. Very quickly talk about out unique methodology that we call Solutions Mining. As Derek mentioned, we’re trying to save you time and effort to search and find tools, we wanna bring them to you. Um, to come up with our topic, you know, content and our tools we do, a literature review for about 40 articles, social media mining through about 500 verbatim quotes on Facebook and discussion boards. Research through advocacy, and than finally a, you know through the chat function we learned from you through today’s Solution Series webinar. So we’ll start with a just a brief overview of Alzheimer’s disease for those of you who are new. Um, it’s a brain disorder that causes changes in memory, thinking, and functioning. Um it is definitely a progressive condition that gets worse over time, and really causes some unique and challenging symptoms. Um, so we will walk through some of the symptoms, these isn’t all the symptoms, but those are the most common; a memory loss, um, that is typically short term memory loss initially, but it definitively disrupts and impacts quality of life. Problems with planning and problem solving, um, struggling to complete a familiar task, things that we do every day without a thought like dressing, rooming, paying bills, become more difficult. A confusion with person, place, and time, um it is the fact that as people progress to Alzheimer’s disease, they actually will go back in time. Um, so they lose their ability to understand, um, you know, who they are, people that’re around them, um what they should be doing, which is really obviously a challenge. A new problems with reading, writing or speaking, so communication, is difficult, a misplacing things in unusual places, we’ve showed a graphic of the refrigerator here, because of how commonly we heard of The Alzheimer’s Association, unusual items might be placed there. Decreased or poor judgment, which definitely impact safety. Um, changes in movement and coordination which in some cases can cause falls, changes in mood or personality. Um, the most commonly here are people that were very mild, very amenable, may become difficult, may even curse when they’ve never done that before, which is obviously difficult for the person in their family. Agitation and aggression which looks like anger but is actually a result of fear, and who wouldn’t be afraid if you’re going through this symptoms. Ah, Sundowning, um which is where people would become more restless and agitated at night, um, sometimes even switching days and nights and being up all night which is challenge for caregivers. Um, wandering, which is absolutely life threatening, and that can happen by foot or car. And then um, in some cases simple reflexes like swallowing, the ability you can swallow, can be impacted. So, um, just if you take of all those symptoms, there’s really no condition like Alzheimer’s disease, a very challenging. So, why have we chosen the theme of fighting back? Um, Alzheimer’s creates a definite sense of isolation, as it progresses, um, and also a sense of helplessness. So when we get our social media mining there was the quote that really jumped out at me, really help me to come up with this theme. Um, the person says, this is a family caregiver, “I feel like I’ve been hearing about plax and tangles for 15 years. Isn’t there anything new that would generate hope and excitement for people living with this horrible disease? All you hear is the negative. You can’t help to develop a sense of helplessness, helplessness can be paralyzing.” And, I know, Linda and I have both seen that first hand, um working with a people as they deal with a vigor at this condition. So, as a result, we, about literature review, we found a great publication, put out by The U.S. Department of Help and Human Services, very relevant for this year because it’s the 2013 update to the National Alzheimer’s Plan, um which we’re showing you here. Um, we wanted to use this as the structure for the presentation and present the five national Alzheimer’s priorities as they are right now in 2013. So, first priority: prevent and effectively treat Alzheimer’s disease by 2025. So, as I’m reading this, if you are someone that was just diagnosed, or if your family member was diagnosed, or if you’re living with Alzheimer’s disease right now, um, 2025 doesn’t sound hopeful. It sounds frustrating. Um, and that’s something that, you know, we deal with every day, researchers are working very hard, but the progress has been very, very slow. Second: enhanced care, quality and efficiency. So when we talk about home care, adult day car, skilled nursing care, assisted living care, you want to make sure that there is, you know, tremendous support and that people are trained and supported. Expand support for people with Alzheimer’s Disease and their families. Um, you know, the things like financial support, emotional support, and just trying to get through the day, which we’ve heard in some cases is called “The 36 hour day” because it’s so challenging. Enhance public awareness and engagement. Um, sadly, after so many years of great work, the advocacy space, and government space, there’s still very low awareness of Alzheimer’s, which we hope this webinar helps secure. And then finally, improve data to track progress. So, as we develop this national plans over the years, we’ve really lack the tool and the data to measure of the progress that we’re making. So, the Government really wants to make sure that we have a better way to track our progress. So in response to the National Plan, um the Alzheimer’s Association national office has published Ten Primary Challenges. And there is definitely a lot of crossover between the priorities from the Government and the ten challenges of the Alzheimer’s Association. So let’s walk through some of these challenges. Um, number one: a lack of public awareness related to Alzheimer’s. So you see that in both, the Government and the advocacy spaces. Insufficient research funding, um some of the rankings that, that I found on The Department of Health website, um, rank Alzheimer’s disease as fiftieth, in terms of funding. And we’re not at all minimizing the 49 condition that comes before Alzheimer’s, we just call it out when we see the symptoms and you talk about the impact.
There’s definitely need for more funding for prevention and a cure. But difficulty with diagnosis, I know during my time, issues were either delayed diagnosis, you know, people having to go multiple physicians, inaccurate diagnosis. Um, you know, someone told them they have Alzheimer’s, but they actually had something treatable or reversible, and then also a lack of referrals to specialist. Um, that there are still GP’s that are out there diagnosing Alzheimer’s versus sending someone to an experienced professional and an expert. Inadequate treatments, which we talked a lot about, um, poor Dementia care, um, so again, there’s um, I wanna make sure that for the healthcare providers that are on this webinar, I think that there is great care out there, very skilled professionals who are doing a wonderful work, but there’s still an opportunity to improve the care they are providing in specially facilities. Um, specific challenges facing diverse communities, I know the the Alzheimer’s Association is doing a great research and work around overcoming cultural barriers, geographical barriers like rural outreach. So that’s a priority. Specific challenges facing those with younger onset Alzheimer’s disease, those diagnosed under age 65 which is totally different situation, very unique. Unprepared family caregivers, which leads to, you know the, the fact that most caregivers um, don’t know what to expect, don’t have a plan as Alzheimer’s progresses, don’t have support and in many cases don’t have the adequate training that they need. ill equipped communities, so many communities out there that don’t have Alzheimer’s evaluation centers or specialists that can support clients and families with Alzheimer’s disease, and the 10th challenge that we hear a lot about is just a mounting cost. And that’s across the board, that’s economy, cost a client, cost a families, it’s um, you know, a huge barrier. So those are, you know, the top ten challenges, and as you can see there’s a lot of crossover between those and the priorities in the Government. So Linda, I know you, um, live with this disease on many levels, your father, support groups, advocacy standpoint. When you hear about five priorities, which one or two priorities rise to the top for you?
- [Linda] Um, for me, I think enhancing public awareness engagement is the key one, to me it’s the cornerstone of all the others.
- [Chris] Okay.
- [Linda] Till you have that awareness, and um, engagement, it’s impossible to even think about the others. And, you know, from my perspective, I think it’s important for Alzheimer’s, the purple Alzheimer’s and awareness to be at the same level that pink and breast cancer is. Now how do we get to that level, so that everyone knows what that is, and that we should do something about it.
- [Chris] Awesome, awesome point. And when you think about the ten challenges that I just know from working with this for so many years, I think that you’ve experienced all those, which one or two arise to the top for you–
- [Linda] I think, again a lack of public awareness, um, add to that inadequate treatments and um, just, you know, some lack of Dementia care and I think that equal the total, the total sum is an unmet need. And I don’t think that the world is prepared to handle Alzheimer’s.
- [Chris] On that note, um if you think, if you sort of take in all those challenges for those there who are not familiar with Alzheimer’s disease, could you just describe one day, just, you know, if you think how difficult it is for someone to just get up in the morning and the family caregiver, just explain how challenging that is.
- [Linda] Yeah, I tell people that no one person can take care of somebody with Alzheimer’s disease, because I talked to family caregivers and they’re frustrated because they think they can do everything themselves. They can’t, it’s 24 hour, like you said, it’s a 36 hour day. Every minute of the day, there’s some challenge, you know, with just simple things we do every day we take for granted; brushing your teeth, you know, getting dressed, eating, um, moving from place to place. It all has to be monitored and adjustments made and it becomes very difficult.
- [Chris] Great, great picture for everyone, especially for those of you who are new, Just wanna recognize again, um the courage that it’s takes and the strength that takes for someone like Linda who’s lived this to relieve it. Um, knowing that her father passed, so thanks again to going through this, Linda. Um, the next priority that we’ll talk through, um is prevent and effectively treat Alzheimer’s disease, and again, from this theme of fighting back and um, hopefulness, we’re gonna focus a little bit more on the non-medical side, and um, some of the non-medical treatment approaches. So, some quotes that really stood out as we did our social media mining and literature review, um, the first one from Andrew Dillon who’s the professor of Molecular and Cell Biology at the Salk Institute: “If we say Alzheimer’s everyone immediately thinks that it’s a plax that actually causes the disease. That couldn’t be farther from the true. The data actually suggest these plax are form of protection that the body tries to put on.” Um, so when I first read that and thought back to all the years that we’ve been hearing about plax, and you know, all the treatments that are around right now today around trying to bust plax and get rid of plax, um it’s obviously very frustrating. And then from the National Alzheimer’s Plan expert we read um, while research on Alzheimer’s disease has made steady progress, there are no or other, there are no pharmacological or other innovations to definitely prevent, treat or cure the disease. So again, I think these two quotes are example of what we hear most about, which obviously, if you’re living with a disease is um, it’s deflating and it’s frustrating. So we want to focus on the positive, um and that is a quote that we have from a great study from 2010 by Javier Ovazerren and Barry Weisberg and the quote says that non-pharmacological treatments and you can also call this non-medical approaches, have been merged based on their research and they’re useful, versatile and potentially cost effective approach to improve the quality of life for both the person with Dementia and caregivers. I think the statement in this type of research needs to be more prominent, especially in The United States.
We’re seeing a lot of this in Europe, but um, for people that are looking for hope and who’re looking for things that work, I think it’s something we need to focus more on. So on that note, let’s look at some of the approaches that really rose to the top in this study, and again I mention you’ll get the study when we stand out and end out following our presentation. Um, the first one is Cognitive Training and Rehabilitation. Um, again, in the United States there is a very little focus in this area, um you’ll hear a lot of researches saying that it”s not proven. Um, I would argue that all the treatments, including the medical treatments as today we talked about aren’t proven, but there is a lot of promise. So Cognitive Training and Rehab really focuses on looking at the areas of strength that a person has, from the same point of cognition and exercising those areas, and making sure that we maintain that as long as possible. Reminiscence, um a huge, huge practice is really helping clients to focus on positive important events and memories from their past, if they are, you know, chronologically going back in time, we need to go back with them and focus on those times that are pleasant and enjoyable for them. Personalized music, um there is a great, great program called Music and Memory.Org, developed by Oliver Sacks and a great colleague, they shown um, they’ve taken iPods and a lot of the i Pods have been donated, and they’ve been taking people that are more in catatonic state, that were not really interacting or communicating, particularly in facilities… And they’ve identified songs that were meaningful for that person, placed the iPod on their ears and obviously make sure that the volume was appropriate, and um people just almost woke up, um, eyes wide open, talking, there were some viral and terrific videos about a Memory Music Program, that um, that you can see on YouTube and we’ll share some of the resources following the webinar. Um, research is showing that there are the parts of a brain that are not infected by Alzheimer’s that um, including enjoyment of music and art. So it’s um, definitely a great therapeutic approach. Creative expression, asking clients to journal and write in scrapbook, physical activity, any approach that they can take to stay active versus being isolated and sedate. Support groups, I can’t tell you how impactful it is for someone with Alzheimer’s to be in the room with someone else who is diagnosed, to meet someone like themselves who’s going through what they’re going through. Um, from the same point of wellness and balance, yoga, Tai Chi, meditation have been hugely impactful. And then, we know that the best outcome based on the study actually come from combining all these approaches. Um, I know that a lot of these approaches are happening in healthcare facilities as a part of recreation therapy, um but I think we can do more of this things in the home. Um from the standpoint of improving activities the daily living, um and again, this is very important, I think from a pride and dignity standpoint, you know when you’ve dressed yourself, and groomed yourself, and you know, paid your own bills for years, and that’s part of who you are, when you start to lose those things, it can be incredibly demoralizing. Um so this study really show that even though people are progressing, and you know, obviously the cognitive loss will continue, we need to fight, and we need to make sure that we’re practicing ADL’s and, and retraining those people that are in earlier stages. Um, so things like dressing and grooming actually continue to do as much as we can for them, but also encouraging them to do more for themselves. There’s a great new innovation called Guided Performance where an example might be someone as no longer able to feed themselves, you hold the spoon in your hand as the caregiver, you put a client’s hand on top of yours, and you use a motion, but they’re still getting a physical movement and when they look down they see their hand doing the motion. So that’s what we mean by Guided Performance. Again, yoga, Tai Chi um, really helps to focus on a balance and physical strength, and than again, um, encouraging people to um, to be physically active, and stay active. Very important point, you wanna make sure if you’re starting any new activities, that you work with a healthcare providers and make sure that that activity will be appropriate for your family member and for yourself. next we’re gonna focus on, the research results related to approaches that improve mood and the peace of mind. Um, Cognitive Behavioral Therapy is a form of psycho therapy that basically focus on understanding and changing negative thoughts. Um, you know, imagine what life would be like, um living with Alzheimer’s disease, and how much that affects your emotions. So it’s important to um, make sure that we’re working with um, CBT therapist that can help focus on the various, um meaningful diversions where we’re actually helping people to focus on their past rolls, hobbies and interests. Alzheimer’s makes it so we lose our connections, and who we are, and who we, you know, what our roll was and what we did. Um, we need to make sure that we’re reconnecting people with those things. And also modifying activities to make sure that they’re relevant, safe and meaningful. We talked about Personalized Music and sport, meditation… Validation Therapy is just an amazing approach founded by Naomi Feil back in 1963. Um, her perspective was that we need to accept the client’s reality, were true. So that if they go back in time, and they’re saying things that aren’t necessarily true today, rather than arguing and disagreeing or reasoning with them, we need to join their world, and make it much easier for them to, to live their life. And that’s what we mean by Validation Therapy. Um, from the standpoint of adult day-care, um that can really provide a lot of socialization which can reduce depression and then in memory care centers we see people responding really well to specially designed settings like having a walking path, having colors that are soothing and having programs, um that really meet, those people need. So um, you remember we talked about brain writings. We, we covered a couple of territories here, the one thing we talked about are the symptoms and the challenges that clients and families experience. Um, if we can now, we’re going to a chat part, I would like to hear, um, what you’re experiencing, you know, what are some of the symptoms, what are some of the challenges, and then from the standpoint of um, the non-medical approaches, what are the approaches that have worked for you? Or for someone that you care about, and we’ll share some of these towards the end of the webinar. From the standpoint of the quality of life for family caregivers, this study identify six approaches that I think are really important to mention, um and a lot of these aren’t happening right now in The U.S. Um, number one In-home counseling Sessions, um you know, working with geriatric care managers and social workers, talk about family issues, um you know, things that we typically come up in family therapy, and again this is very rare that this happen. On-line connection with peers and healthcare providers, um you know, obviously Alzheimer’s causes isolation and makes it so that many people can’t leave their home, so web is a great opportunity for people to connect. Um CBT we talked about, on, on-going telephone support, um from either an RN or a social worker, um education and a two topics that um, these researches felt were most important for family caregivers were general coping skills and the ability to problem solve. You know as things happen that are unpredictable the ability to adapt and um, problem solve. And than finally, a Support Groups. And I know the Alzheimer’s Association has a great early state support group where a person comes with their family member, and meets together, and than they separate, and meet separately so people with Alzheimer’s are together, and caregivers are together, and I think, I just thing first hand how impactful that could be. Let’s dive in to some of our tools, we’re gonna show you a few as we go through the presentation. Um the first one related to Cognitive Behavioral Therapy is a great organization called The Society for Cognitive Rehabilitation, um one of the few organizations in The U.S. that um, does Cognitive Rehab Therapy and acknowledges the benefit with Alzheimer’s disease. Um the second tool is a great program related to reminiscence called Recollection Connection. Um this is a program that a family or facility um, can access, that gives you tools and approaches to have active reminiscence and Validation Therapy, both in a home and facility. And again, you have a contact information there for interested in that program. Um, the a nice U.K. guidelines, um, very progressive guidelines from The U.K. And you’ll notice the focus here on social care, um, where we’re not only treating the medical aspects of the disease but the big portion of these guidelines are really treating the person, will become Person Center Care. And a lot of a non-medical approaches that we talked about are covered here. And then, last tool The Alzheimer’s Association has, I think one of the best presentations, you know comprehensive presentations of all the treatment options that are available for clients and families. You can see wide links here to information about medications, treatment, alternatives in non-medical approaches. So definitely a tool that you wanna check out. Um, the next section in priority, enhanced care quality and efficiency, so we’re gonna focus here today on care coordination, empowerment and recognition particularly for a healthcare provider that are working every day with Alzheimer’s disease. The, the best Alzheimer’s disease care models really have four keys that’s practical. Number one: we need to operate a single point of contact for clients and families. So, I know in California, New Jersey, um Pennsylvania, The Department of Health has, has one number that people can call, and, and there’s someone there a case manager to triage, and they sure that are getting them to the right services. Um forming a multidisciplinary care team, so having a social worker, a geriatrician, a nurse, medical folks, you know, having all those people under one roof really streamline the process for clients and caregivers. Um developing a personalized action plan for clients and families. Alzheimer’s as they said, affects everyone differently, so you need to have something customized, flexible that works for each person. And than offering on-going dynamic learning developing opportunities for dementia care professionals, things like training, recognition, career ladder. Um, from a Brainwriting standpoint we have a healthcare providers joining the webinar here. It would be great to hear any other best practice care coordination programs and tools that you’re aware of and you can add that in your chat board. So when we say dynamic care team, um you know, as I mentioned, one of the challenges with Alzheimer’s disease is care coordination. Many people have to go on 5 or 6 different offices to see, um the different providers that support them. We wanna to show you in one place here, um all the folks that really can support clients and family caregivers. Starting from the top, um home care is incredibly effective especially in giving a caregiver a break, particularly at night. And also, helping with a lot of non-medical approaches that we just talked about in terms of reminiscence and assistance with ADL’s. Nurses, social workers, geriatric care managers, again in coming to home and make sure that they’re helping from the, from the same point of a motion and access to services. Neurologists, geriatricians and geriatric psychiatrists, these are the experts that should be diagnosing Alzheimer’s disease. This is their training and this is what they do every day. um Adult day-care can really help with socialization. We talked about Cognitive Rehabilitation therapist which can help with Cognitive Training. Dieticians particularly as people, um lose the ability to eat and start to lose weight. Cognitive Behavioral therapists they can help with emotions and re-framing some negative thinking. Um, facility professionals, you know, nursing home assisted living, a rehab professionals like OT,PT and speech, um so again, help to fight back and retain strength and abilities. Primary care providers, nurse practitioners and physician assistants, you know, you really the single point of contact and really the, the folks that really help to coordinate care, and, and you typically have the closest relationship with the client’s family. A Recreation therapist, you know done that job for years in terms of making life meaningful and facilities, and again, focusing on Cognitive Rehabilitation. And than, believe it or not one of the most effective approaches right now in improving mood for clients with Alzheimer’s disease is massage. So massage therapists, in especially facilities can come in and do chair massage and another types of relaxation therapy. So Linda, again, I know you’ve done a lot of um, you know lived in this condition with your dad, you worked with a lot of different kinds of healthcare providers, um, when you look at this graphic, and see all the different people that were recommended here, um who are the people that you’ve worked with, and who would you say was the most helpful?
- [Linda] My dad was at home for a while and than he was in a facility, so I would say we used a lot of these, um, types of professionals. When he was at home, we get help from a geriatric care manager, to put a plan together, so that we would be prepared for future events. Um, he had a neurologist, he had a wonderful um, geriatrician that we worked with, that was kind of a help for us, and kind a coordinating a lot of the other specialists that we saw. Um, he did go to the an Adult Day Program for a while, and that was wonderful to keep him active. It actually gave him a little job to do so he felt like he was useful while he was there. Um, and we also had an in-home care so that my mom could get out and do the things she needed to do for herself and to keep the home going. And while he was in the facility, we relied on a lot of people to help us, um, nursing staff, obviously, the day to day people that were taking care of his needs. Um, we worked to a social worker, we had a Family Care Sessions on a regular basis. We worked to the dietitian because, you know nutrition was an issue for a while, so we needed to make sure he was getting proper nutrients. Um, and we had specialist arrange rehab Therapy, to keep his joints moving so that he wasn’t getting tighten up and you know, stuck in bed all the time. And than the recreation staff, you know working with activities, so really did, now than I think about it, use almost all–
- [Chris] Everyone on the graphics, right?
- [Linda] With a whole Hub so–
- [Chris] I know that some sitting on this webinar and um just beginning this process, this sounds a little overwhelming.
- [Linda] Yeah.
- [Chris] How hard is it to, I know you mentioned geriatric care managers sort of orchestrating. Can you talk a little bit about where you started and how hard it was to coordinate all this different care–
- [Linda] I think, you know a lot of it came with our involvement with a Support Group. Um, that’s where we talked out of people, learned what they were doing, and you know, got ideas of what resources were available to us, because you’re right, you don’t know when you’re getting started, you don’t know what’s available, you don’t know what to do. So, and than also a geriatrician and The Alzheimer’s Association. So, you know, we just had our eyes and ears open all the time, to see what we needed and what else we can add to do mix.
- [Chris] Awesome, awesome examples. Um so again from a Brainwriting standpoint, we’ll love to hear from those of you, you know living with this disease, you know, who is on your care team, um which, which members of the care team have been most influential, and then any tips you have for those that are first starting, down the road with Alzheimer’s disease, um you know how you would recommend that they get started in care coordinating and planning for caring future. Thanks again, Linda.
- [Linda] Sure.
- [Chris] Um, so some of our tools related to care coordination, and again we wanna show all of these, um one of the things that I think it’s really interesting for health care providers on the webinar, those are great publications The Alzheimer’s Association that is, has put out, they really captured the best, um quality of care disease management programs by state, um so I, I think if you are living in any of those states, I think it’s great to read through this and see what, you know what the best practices are, and than if you were on the public policy site on The Department of Health site, I think this are best practices to learn from, and to, and to try to replicate in, in all states. So, it’s a great publication. And then a second tool, that again, I, you know we keep calling out The Alzheimer’s Association as a great site and they have a web page dedicated to care coordination and working with care providers. You get tips for um, selecting providers, there is a search tool to find providers. there’s also a great page here related to, um care planning which is a really important part of, you know, caring facility and helps you to prepare for your meeting, PBS documents here that help you to prepare for your office visits, so entire page, um, really trying to make life easier for those who are trying to coordinate care. Um, from the standpoint of quality care, um, we’ve given you a number of tools, we just gonna focus on one; The National Institute on Aging has a great branch called the Alzheimer’s Disease Education and Referral Center, and they’ve published, um what they call Alzheimer’s Disease Research for Care Centers. We have a great interactive map here so that, you know again, you can look up your area, I just wanna emphasize these aren’t all the Evaluation Centers, but these are those that the Alzheimer’s Disease Education and Referral Center is highlighting so you can click on there and very quickly find out where the centers are near you. And again, I can’t emphasize how, how easy is for you, um, when you work with a center that has all the services, evaluation and treatment in one group. So we’re gonna shift now to our third priority which is expanded support people with Alzheimer’s disease and their families. Um, you know obviously, we, we’re talking here about how difficult Alzheimer’s disease is, we wanna make sure that um, there’s a positive experience for clients and caregivers. There’s a, this heading here really jumped out at me from The Alzheimer’s Association Publication, they said you know, we need to improve the experience for clients and caregivers. Um, and down below here, we’re talking about some of the challenges that impact, um you know the disease is enough to deal with, but also have to deal with challenges it turns to stigma, um you know the idea that there’s just a wide spread lack of knowledge and understanding about the disease. Um, a lot of stories about people going into restaurants and um, you know no one in the restaurant understands that someone with Alzheimer’s might act differently, might eat their food differently. Um negative experiences with um, people living with Alzheimer’s disease, for people living with Alzheimer’s disease. Poor understanding of the scope, in terms of all the symptoms and the impact, isolation for clients and caregivers, um we hear sadly, you know many people feel that um, their friends are shunning them, the family are shunning them, and again a lot of that is just lack of education and comfort, ‘cos it’s such a unique condition. And than lack of targeted services and support for those living with younger or early onset Alzheimer’s disease. So um, some tools related to that challenge, we’re gonna call it The Expanding Support Tool Kit. Um, The Alzheimer’s Association has the great web page, um related to overcoming stigma, um they talk about why you should fight stigma, you know the state of the stigma experience, and there’s some great videos here and personal testimonials, and if anything really helps to improve empathy, so I think these are things that um, you know people that aren’t living with Alzheimer’s disease should definitely learn. And then from the standpoint of early Alzheimer’s disease, again very unique um dynamic when you’re in your forties or fifties, um there is a great web page from The Alzheimer’s Association that talk about, you know, who gets young, um early onset, you know, has a diagnoses that cause resources treatments, you know how is just a different dynamic and where people can go for support. And than finally, Linda talked about just a powerful nature of support groups, The Alzheimer’s Association has the great interactive map, when you get towards the bottom of the web page where again, you can click on your state, and find a chapter near you. If you, if you learn anything from this webinar, it is cause The Alzheimer’s Association and you know, just connect with a local support group, it really make’s the things different. So we’ll talk a little bit about that in a minute. So um, Linda sadly there are negative experiences, um I know, you know some of those people experienced first hand, you might hear some of those things in the support groups. Could you um, share on the negative sides some of the thing that you heard, you know negative experiences and also you know the positive experiences that you’ve seen and heard.
- [Linda] Sure, um one negative experience that didn’t happened to my family but um family that I know of through The Alzheimer’s Association. A husband and wife, they were in their sixties, they had to move three times in a year. Um, they just could not get, you know people to embrace what was going on with them, they had a lot of problems, stigma you mentioned, and a husband said when he went to Washington D.C., um to see our legislators, he told the story about how, you know, when you tell someone you have cancer, what do they do, they come up and they hug you, and they give you support. With his wife they told someone that she had Alzheimer’s and they actually stepped back. I mean that really speaks to the lack of understanding and you know, emotional support that sometimes people experience. On the positive side, I can say with my dad, we had very good experience with our physician. Um, that we saw the three of us: my mother, my father, and myself we’d go to every appointment together. And I always felt that she was very communicative with all three of us, she did not, she spoke directly to my father, did not talk over his head, asked him to answer questions, and that made him to feel at ease. And then, she would then, you know ask for input from myself and my mother, and it made all of us feel like we were getting something positive out of the visit. And that was, you know that always stuck with me, that people do understand and they care.
- [Chris] Yeah. And I know that physician that you’re referring to, and I think it’s important to mention this physician is from one of the specialty Alzheimer’s–
- [Linda] Right.
- [Chris] She was, you know dealing with this every day, obviously well educated and very sensitive–
- [Linda] Yes, she was very good–
- [Chris] Families that are experiencing… And then Linda, on this opic, what are some of the things you would help, think you would help and proven the experience, you know what are some of the things people can do on the webinar, to make life easier and more comfortable for people with Alzheimer’s?
- [Linda] Um, we do have one thing that came out of um, you know you mentioned going in a restaurant and you know, hotels and places and people don’t understand. Um we had people make up little business cards that say, you know “My loved one has Alzheimer’s. Please be patient with them”. And on the back we would give the um, phone number and the web site–
- [Chris] Wow! Wow–
- [Linda] The Alzheimer’s Association. So that people would actually be able to say Oh! This person has, you know, problem, I need to be sensitive. And than get some more information about the disease itself. That’s very important–
- [Chris] And the other part, great part about that is, you know, that you don’t have to say something in front of him–
- [Linda] Right! You don’t have to–
- [Chris] Just hand a card to a waitress or wow… Great, great idea! Awesome! So we’ll,we’ll talk, now we got a final national priority um, enhancing public awareness and engagement um, again such a great need out there today. Um, we have some great, great tools, um that we’ll walk through. Um one is just something you cannot miss um it’s, it’s, it’s been out for a while but PBS put out a documentary called The Forgetting. Um which from the standpoint of enhancing, understanding and over, overcoming stigma is just a great, great resource where they, you know just document the experiences that families have experienced, we have testimonials of both, clients and family caregivers. Um, I think some of this documentaries and this is just the one the most well done, that I’ve experienced and you definitely wanna check that out. A DEAR, The Alzheimer’s Disease Education and Referral Center has a great web site called Alzheimer’s Disease and Alzheimer’s Basics. Um a lot of great graphics and descriptions starting from the very beginning of what Alzheimer’s is, um causes, you know what happens to the brain which I think really can make a difference in terms of the empathy, if we’d really understood that it’s a really brain disease and than people really can’t help, they do what they do, you know, that these are symptoms that they can’t control. And then um, the last tool comes again from the Alzheimer’s Association, a great web page um, you know about, I’m sorry The Alzheimer’s Foundation of America, a great web page covering the um, definition of Alzheimer’s disease, the warning signs, diagnoses symptoms so just another, another great organization. Um just, just to understand the scope of symptoms of Alzheimer’s disease. Some tools enhance engagement, um, the first is probably the most important and that is joining the cause. Um, again this idea of fighting back um, the helplessness and the hopelessness the minute you participate in a walk and aline yourself with people that are fighting back, it’s just so energizing. Um so the Alzheimer’s Association Advocacy site, um you know if you have a lot of time, there is a lot of writings, um of letters than you can do, the legislators visiting, um events on the hill, um, advocacy efforts, locally and nationally so there’s great information here related to that. Um, The Fisher Center for Alzheimer’s Disease, um has another great content and section related to um, understanding Alzheimer’s disease and getting involved. And than again, we also have The Alzheimer’s Foundation of America, um and just a really well done web site, talking about screening days, connecting with social workers and a lot of the topics that we gone through today.
So Linda, I don’t know anyone that has been more involved than you[Linda laughs],
and this was during the time that you were actually caring for your dad, which you know, has always been both inspiring and also amazing to me. Um, could you talk about what drove you to get involved in the middle of work, you know being a full time employee, caring for your dad, caring for your mum, and your life. How did you do it? What drove you to do it?
- [Linda] Well I, I get involved in things I’m a joiner and I, my parents always very dedicated to causes and, you know, I figure what better one that the one that we’re dealing with, at the time. So, I guess Chris I met you at a first walk that I did. And than, shortly after got involved with a support group, and I joke around, I said this is my part-time job. And it’s really my personal mission, and you know, there is, this disease as we said at the beginning can make you feel hopeless but, getting involved is good for your soul and then it’s also good for the, for the cause. So it gets you, you know, advocacy and getting involved is really empowering and it can make take that hopeless feeling away. You can’t control the disease but you can make a change. Even little things that you do. We’re talking about being an advocate, it sounds like a scary word, it sounds like a lot of work. They, it can be so easy, um The Alzheimer’s Association can send you an email and you click a few buttons, and boom, you’re connected with your legislator. It’s that simple. Or you can go to the Day on the Hill. I mean is anything you wanna do, as much or as little, but every bit helps.
- [Chris] And than on the topic of the support groups, I know they’re still underutilized, a lot of people have the ambivalence about what the support group is and what happens. What would you say to those that um, you know, are thinking about support groups but hasn’t yet go.
- [Linda] I’d say it, it would be the one thing you can do to not feel alone, ‘cos a lot of people that are, you know, caring for somebody they’re involved in a care process so they feel alone, they feel isolated, they feel like they don’t have information, another people to talk to. You can go to the support group and you don’t have to say a word, you can listen and gather information, but it’s really therapeutic if you go and you share. People will learn from you as well, you share best practices and ideas and it’s amazing energy in the room when, you know wish they, there were more people and I wish they would help more frequently and that more people knew about them ‘cos they’re very powerful.
- [Chris] And a great message and a great example that you said that you start as a member of the group and are now the leader–
- [Linda] Yeah[laughing].
- [Chris] So again just a, um amazing story and um, it, it just shows that when you hear about sadness and sort of a devastation of Alzheimer’s, that there are people that are swinging back. You know they’re fighting back which is what this is about.
- [Linda] Sure.
- [Chris] So we like to close our webinars before taking questions with some key takeaways. We have four. Number one: please take the time to review The National Alzheimer’s Plan 2013, um and look for opportunities to get involved, look for something that your passion is about, um and like Linda said, um you know whatever time you have will help. Non-medical treatment approaches do offer promise today, um sector care coordination is critical, and you know, let’s all work together on this webinar to improve the experience for those people who are already dealing with the challenges with Alzheimer’s disease.
- [Derek] Okay, great! Thanks Chris, thanks Linda! We, what we would like to do now is open the webinar to um, both question and answers but also, if, if you are someone on the phone who, um is a family caregiver who has a family member who’s been diagnosed with Alzheimer’s, or um, maybe you’re professional in the space and you, you are a caregiver in the space or a professional who’s assistive with Alzheimer’s. We wanna hear your experiences, what tips and tools do you have, um which of these topics have resonated, what resources are available that we have not discussed, in addition to any questions we may have for Chris and Linda. So, if you enter those into, go to webinar panel on the, on the right side of your screen. If you click the orange arrow, the panel will pop out, you can just type your question in the chat bar. We will have quite of few questions, again questions, comments, tips, tools, anything that you’d like to share with the audience. While the questions are compiling here, looks like as, a Chris did the Brainwriting exercise and asked for other challenges that, that you’ve seen while you’ve gone through Alzheimer’s, and we have Dana who mentioned, um challenges, financial burden on caregivers, and lack of resources.
- [Chris] Yeah, absolutely, and um, you know I think that um, again there’s lack of understanding of the um, when you have the financial burden, where do you turn. The Alzheimer’s Association has some great um, respite branch, you can reach out to your county office on aging who also has um, you know direct line with any respite or financial support resources.
- [Derek] Fantastic, and other comments I one here from John. Um John mentioned using, um I believe this is Nintendo Wii the environment gains to help engage and get the physical activity.
- [Chris] Yeah, John thanks for bringing that up. I know it’s very innovative, a lot of healthcare facilities and assistive living facilities are looking for new ways to um, to exercise. I think there’s missed reception that because people with Alzheimer’s disease might be older adults that are not gonna enjoy or benefit from Wii, but it’s um, physically active and highly visual, a great, great point.
- [Derek] Being at um, I think it’s Friday’s black Friday across the country, too. You might be able to get a Wii for good price, I know our family use it for my grandmother with Alzheimer’s. Um, let’s see, we have another comment from Dana here, um we also really stress Persons-Centered Care at our a day, adult day respite center. Um, thanks for that comment, Dana. And, let’s see. We’ll try to focus in, we have a lot of questions, a lot of comments, so let us just digest this for a moment. Um, we do have one question, it’s coming from um, John and it’s a sort of question for the both panelists. Um, do any of us know does lumosity have products dear towards Alzheimer’s clients. I heard these all, these lumosity commercials and um, how about hear it from panelists?
- [Chris] Yeah, this is Chris. I would say that um, what I can about lumasity or, you know the idea of trying to improve brain power and improve memory through memory exercises. Um some of the research, um you know we definitely have research that says that that can improve cognition and memory for those who do not have Alzheimer’s disease and Dementia. Um you know, my perspective is when we talk about cognitive training that if you have um, um, a family member or clients that um, understands what lumasity is and um, is eager to try it, and it’s something that seems to be helping them versus causing anxiety. I think every time they have an opportunity to exercise their brain and it’s a positive experience, I think it’s a good thing.
- [Derek] Exactly,Chris. Let’s see, we have a question from um, Melinda I believe and um, she asked, who assess caregivers and, and how. Another words, who cares for caregiver?
- [Chris] Great, great point. Um, Linda talked about the geriatric care manager that she worked with. Um, you know, one of the sad things is that um, focus obviously is typically on the person with Alzheimer’s. The caregivers also focus on the person with Alzheimer’s, so they’re the last person to ask for help. I think um, you know the people that are skilled in terms of assessing, the needs of a caregiver or social workers, geriatric care managers, particularly they that coming at home, and than in nursing facilities I would argue that the entire care team, especially the social worker, recreation therapist. But from the skills standpoint I would say social workers and geriatric care managers do very good assessments and use validated tools to do assessments and um, provide services for family caregivers.
- [Linda] And also support groups.
- [Chris] Absolutely.
- [Linda] Go there, people I always say to people to come in to my support groups. So the first time I say “What do you do for yourself? Have you cared for yourself? Why don’t you give yourself a break?” and most of them look at you like you have a 50 heads but, it makes ‘em think.
- [Chris] Yeah. And a great thing about support groups is, you know, you might get clinical recommendation from a professional, but when you’re speaking with a family caregiver you’re getting practical, you know, real world examples, I think people need both, but I think that’s one of the benefits of support groups. Great point.
- [Derek] Exactly. Um, Dana has a comment here, um as a tool that looks like Dana has used. Dana says “We always give the caregiver a copy of the book, The 36 Hour Day, as their Bible for Alzheimer’s in Alzheimer’s care. And while you typed that in Dana, I took a look, looks like that, that book is by Nancy Mace, I’ve not had any experience with it, how about the panelists?
- [Chris] You, you know for me in the industry it’s considered the Bible. You know, especially for um, you know for someone that’s first learning that they have the condition or that someone they love has the condition. Um, I think you can tell by the title, it’s written from the standpoint of um, just the exhaustion, the burden, the impact of daily life. It’s definitely um, gives an overview but I think it’s from an, from an emotional perspective, which I think people really reason in well.
- [Derek] We have um, another comment from Dana, “I hate the stigma of Alzheimer’s disease. I’d like to tell caregivers that there is that joy, joy in the present moment with their loved ones suffering from this disease. Someone with Alzheimer’s can’t have a quality of life if we focus on what they can’t do instead of what the disease has done to them.”
- [Chris] Linda can you think back it might be hard, but just think back to times when, you know, things weren’t going so well and something happened with your dad, were you laughed or you know, sort of a positive experience that you had with him?
- [Linda] Well, we had a lot of humor in my family, and some of it I can’t discuss on the phone.[everybody laughing]
We did have, you know it is, it’s true, you try to focus on something, you know if the person is having a bad day they having it, if you’re having a bad day, they’re gonna know that, they’re gonna, you know kind of reflect what’s going on with you. Than you need to take a break, just walk away, and come back, and you know what, they could have forgot the whole bad experience and you can turn it around really quickly. And if they’re happy and comfortable, and serene than that’s good for them and it’s good for you, too. So if you can create those moments of joy and peace and just enjoy in a little things about life, than that’s good for everybody.
- [Chris] And I’ll share another quick story when my grandmother had Alzheimer’s, I was obviously very young. Um, we were just trying… It’s very difficult to figure out the things for her to do. Um, and I was in my teens, huh! So um, someone had just said “Well, can’t she cut coupons”, and my brother said “Well, she can’t do that anymore”. And then it just hit us, does it matter whether she does it right or not, and you know, we got the coupons, she cut everything; she cut TV Guides, she cut, I mean coupons but just to see her light up and laugh and sort of for us to see her doing that activity, I think this is what um, Dana’s referring to, that in those moments, maybe things aren’t been done right–
- [Linda] But it doesn’t matter.
- [Chris] But were they been done in the past, that’s the way to help somebody to be connected–
- [Linda] I took, I took my dad to a shelter to volunteer, you know, we were there just socialized the dogs and cats that came in, and it was great ‘cos he, he was so happy to be with those animals. He wanted to take them home, but it was nice to, nice adopting a dog.
- [Chris] This is the, this is the theme of this webinar, these are the stories that we don’t hear, you know, we hear about um, you know that we don’t have a treatment, we don’t have a cure, but there’s so much out there, that we can do to fight back and enjoy life.
- [Derek] Absolutely. Great examples. We have um, a comment and a question from Patty Taylor. Patty says “My 77-year-old grandmother has Alzheimer’s disease. My father is the primary caregiver. They’re both very resistant to help from the five children or any external help. How to convince them to except support?”
- [Chris] Great, great question.
- [Linda] Well, sometimes it depends on the person and the personality, but sometimes you can, you know use the emotional, pull the hearth strains like, you know “I’m really stressed out. If you let me help you, it’ll make my life a little better” and that might ease up their resistance. They might say “Okay, well I’ll do it for you”.
- [Chris] Yeah. The other thing and this is where The Alzheimer’s Association or providers can be great, sometimes it’s hard to hear this from a family member, or from someone inside the family, and that um, you know a lot of the time it’s denial, you know, people are worried that if they acknowledge Alzheimer’s disease, that it’s gonna be, you know what’s gonna happen, and what’s gonna change. So, you know, getting a simple brochure from The Alzheimer’s Association that’s outside of the family, sometimes can help to break down those barriers, and, and to be honest, sometimes it just takes time that they just have to adjust. You know, until they’re ready to hear it um, you know, it’s really difficult for them to accept.
- [Derek] Here we have a lot of fantastic comments, keep this coming. um, we have a comment from Dana, who mentioned “We install the “It’s never too late” touch technology, and it has been a tremendously successful and engaging our clients. Um, looks like and it actually might good actually also ask “Are there any other technologies that can help enhance the life of people with Dementia?” So, I’m not sure that any of our panelists have experience with “It’s never too late” touch technology?
- [Chris] I haven’t had experience with that technology, but um, there are if you go on The Alzheimer’s Association web site and also The Family Caregivers Association web site, and you search Alzheimer’s disease and technology, um just pages and pages of i-pad apps, apps for your smart phone, um other tools related to reminiscence and Activities Therapy, just a great collection of tools. The other thing that I’ll be happy to do is um, for those who are interested, you know shoot these links to you by email after a webinar.
- [Derek] We else have a comment from a Tracy Miles. Tracy says um, “I’m a certified care manager. I take my i-pad or laptop to clients and search for music that they enjoy. I also search for topics that they like. For example, I have one woman who loves cats, so we look on You Tube for videos of cats that always make her smile.
- [Linda] Of course, there’s a million of those![Linda laughs]
- [Derek] O yeah, I think You Tube said a couple of weeks ago 18% of all the video on You Tube is of cats. So there is a lot out there today.
- [Chris] Yeah, if you think about memories and, and um, music program within i-pod, you know, there’s a lot of great work being done with Wii and iPad, I just love it! I think it’s, it sort of breaking down the stigma that um, you know things from today can impact people that are older adults. Great, great ideas, great tools.
- [Derek] We have a comment and a question from Barbara; “I work in a Senior Residence, and other residents are often cruel to anyone with non-normal behavior. How can we get them educated? They do not know, they do not show up for speakers”.
- [Chris] Yeah, so, two, two ideas. One: if you go on to the, when you get the presentation if you’re going to The Alzheimer’s Association site and click on your state, you’re gonna see a chapter, um all the chapters will offer speakers, but I also, I’d also went out specifically to talk with, um people and let say a system of living facility who were, what we found just petrified about Alzheimer’s. So, they would say that a person couldn’t seat at her dining room table and a dining room at a facility because they actually thought they could catch Alzheimer’s. They thought it was something that was um, communicable. So all talk in that case was educating and um… You know, number one, you, you can’t catch it from having it at your table, um and number two, helping them to understand what it must be like for the person with Alzheimer’s to, you know, to sort of be ostracized. So, um I think formal presentation can work, but in this case where people are sort of resistant to group, I think that there’s also opportunities where someone could came in and do something more one to one, and with a smaller group. Um, and just, usually it’s typically education and a little bit of sensitivity training.
- [Derek] This one texts to Linda to get your feedback. Dana mentioned “There is a growing amount of fraud with individuals with Alzheimer’s. We need some advocacy there and, Linda as you think about just how your family took care of, of bills, or even thinking about how to make sure that um, there wasn’t any abuse to providers or anyone who might be sending bills to the household. How did your family take care of that?”
- [Linda] I don’t, we didn’t really have any problems with that. My mom took care of, and she’s, she was very savvy and um, you know would not been taken by any kind of things, you know whether my dad was sick or not. But um, you know just um, just in general, just to be comfortable with caregivers, people are coming into your home, sometimes that’s not an easy thing to have. And what my mum would do, when she had somebody new coming, she would go next door, and said “I’m gonna be next door. Here’s the phone number”, and she would stay for half hour, and leave my dad with a person. And than the next time if everything went well, she’d stay for an hour. And than she build on to it eventually she could stay the whole 3 or 4 hours. So you have to get comfortable with people. It’s not always the right fit in the beginning but, you know it’s a comprise or that kind of thing.
- [Chris] This is a great example of someone, you know, you have an issue that you want resolved, there’s a form, The Alzheimer’s Association has a form that you can write a letter, you could actually do, you know, Linda wanted to um, um Early Alzheimer’s support group, she reached out for the chapter, we started one, you could, you know take this idea pro, which I think we all agree is really important. Call your local chapter and um, yourself. Spread the chapter to create more awareness and maybe some educational programs around–
- [Linda] That could be something we talk about when we go to Washington.
- [Chris] Yeah.
- [Linda] That could we have all our topics that are concern to us down there so–
- [Derek] Absolutely. Great and now we have a comment from Barbara, She says “I have learned to stop and think before I correct my husband. As long as it is my fault, in a funny way we can laugh at anything. We have no stress in my, no stress in my team. Sure makes loving him fulfilling.”
- [Chris] Yeah, and you know what? I give you a lot of credit for getting here, I think it’s really, really hard for people when someone blaming them for things they didn’t do. Um, you know, when someone is saying things that are hurtful, especially when you’re a family caregiver but it sounds like you understand that that’s part of a disease. You know when people have Heart disease they have chest pains, when someone has Alzheimer’s disease, they might blame, you know their most close family caregiver for stealing their things. You know and, and that you’re understanding a lapse and to accept that, and you know make sure it’s the positive environment for your family member. The key though is you also need a place where people are supporting you. You know you’re supporting him now, that’s where the support groups come in. You know that you can go to a support groups, and, and be able to understand. And you do need defense, and you do need um, vocalize that stress and get the support that you need. But thanks for sharing that.
- [Linda] Along to that point, you know I, we say that a lot how important is it, and like you’re saying it might be something that, you know, you did or didn’t do wrong or whatever but, you have to remember is it important, who cares, it’s not gonna matter tomorrow so you just have to put it in a perspective. So I agree, that’s um, you know using humor is a good way to do that.
- [Derek] Absolutely. We’ll read just a few more of these comments. One from John: “A good read for new and season providers and caregivers and family caregivers. It’s “Hiding the Stranger in a Mirror” by Cameron J. Camp PhD”. So we’ll include that, that link, or maybe a resource as well, thanks for that, John. Um, Dana also mentioned, if you’re getting started, caregivers need to educate themselves and find and learn all the resources available to them. And I placed a lot of resources that’re insured today by our panelists. Um, a great quote I think from Dana here who says “The entire sum of existence, is the magic of being needed by just one person”. I think that quote was from um, V Putnam. Um, individuals with Alzheimer’s just want to be needed and having a purpose for day. Um, Um, love Linda’s story about her dad volunteering. So, fantastic and than we have um, we’ll throw the last question for our panelists here, um: “What part or stage of Alzheimer’s disease is more difficult to take care of?”
- [Chris] You know we get asked, we use to get asked that so much at the Alzheimer’s Association. I would say there isn’t one that’s more difficult, they’re all different. You know I think in the Early Stages it’s just a shock. You know, that this is happening, that the change is going on, it’s also a typically when the person is most aware of what’s happening to them and they have most insight which creates a lot of anxiety. Um, in the Middle Stages it’s usually where people start to have what we call, we call it Agitated Phase, where they might start to wander, get restless. So there is um, faster point of exhaustion for the client and a family caregiver. In a Later Stages a lot of the agitation, and wandering, and pacing repetitive question resolves, but now you have someone that isn’t talking, that isn’t making eye-contact, you know you can communicating as much as they have, and I even heard caregivers say, you know, “I use to complain about”–
- [Linda] Right. I miss it, right–
- [Chris] “What I would do hear my dad one more time.” So, I don’t know, I guess, and Linda you can answer from your perspective, I, from my perspective there is no easy stage. They’re all difficult.
- [Linda] No and, and you’re grieving the loss of the person before they go. And that’s difficult. For the caregiver because you’re, you know like you said Chris, when they’re agitated you can’t, you know you, you’re like ready to pull your hair out, than when that stops, you really miss that. And than you feel guilty for feeling that way.
- [Chris] Yeah. Yeah. And you know an important point with having Linda here is that um, they call Alzheimer’s “The long goodbye”, because you’re so preoccupied with care giving, you don’t really get a chance to grieve the loss, and it isn’t in many cases until the person passes away that you actually start to process everything that’s happened.
- [Linda] Right.
- [Chris] Could be 7, 8, 9 years. And than when you look at Linda and the rest of our support group, the majority of folks have already lost their parent. And they’re still going to support groups and advocating and going to the walks, so the stages of Alzheimer’s, you know, to me progress even pass um, when person passes–
- [Linda] Yeah, the ones that stayed on, we’re helping other people, but we’re also, you know, going through our own grief process–
- [Chris] Yeah. Yeah, Absolutely.
- [Derek] Fantastic! Great questions, I think just great questions and comments from the audience, and Linda and Chris, thanks for sharing your professional and personal insights, um, into the topic. Um, in closing here, again want to thank um, Linda for her time and courage just, you know less than two years from losing her loved one and, and coming in and sharing, we really appreciate. And for, what you continue to do for this support group and um, everyone here still supporting and, Chris, thanks, thank you as well, and you other folks here in the room like Kelly Howard national event manager for coordinating a webinar, and our graphic design artist Joe Carr and Michael for creating really impactful visual presentation. In closing, Griswold Home Care wants to thank the audience as well um, we are a non-medical, purpose driven, home care company, that has been around since 1982. Our founder Jean Griswold started a company after she was diagnosed with Multiple Sclerosis and wanting to, making an impact herself, um in her Philadelphia community founded the company um, 31 years ago. Um, we now support um, older and disabled adults in 37 states, and we’re giving week supports about 8000 clients including those who need support with Alzheimer’s and Dementia. Um, we’re plenty glad to take any questions on-line or of-line if you ever need support with non-medical care Griswold Home Care is here to support you as well. Um, again, thanks to the audience, um for your participation. We will have the slides and the recording out to the entire panelist um, um within about 48 hours, and with that we’ll going to close the webinar. Again, thanks Chris, and thanks Linda and everybody have a great week.
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