Griswold Home Care hosted a national webinar workshop on Thursday, September 26th from 4-5 PM EST entitled, Living with the Challenging Symptoms of Dementia. This solutions-based webinar included real stories and practical tips from an experienced family caregiver. Join us in recognizing World Alzheimer’s Awareness Month in September by highlighting dementia symptoms and their impact on quality of life. Dementia symptoms are often misunderstood and create frustration and exhaustion for clients and their family/professional caregivers.
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Griswold Home Care hosted a national webinar workshop on Thursday, September 26th 2013 entitled, Living with the Challenging Symptoms of Dementia. This solutions-based webinar includes real stories and practical tips from an experienced family caregiver.
Join us in recognizing World Alzheimer’s Awareness Month in September by highlighting dementia symptoms and their impact on quality of life. Dementia symptoms are often misunderstood and create frustration and exhaustion for clients and their family/professional caregivers.
The webinar is hosted by Christopher G. Kelly, MEd, and Rosemary Kane, family caregiver.
The webinar workshop features three steps:
Step 1: Learn about the challenging symptoms of dementia and their impact on quality of life for clients and family/professional caregivers
Step 2: Hear real stories and practical tips from a spouse who supported a client with dementia
Step 3: Access a Living with Dementia toolkit that offers innovative online tools and resources for managing the symptoms of dementia
People living with dementia, family caregivers, professional caregivers, healthcare providers, and those generally interested in learning more about the symptoms of dementia are encouraged to attend this webinar.
Derek: Good afternoon, everybody. Welcome to today’s webinar series titled, “Living with the Challenging Symptoms of Dementia.” My name is Derek Jones. The Griswold Home Care solution series webinar program is a monthly workshop designed to empower and provide practical solutions for caregivers, families, and healthcare professionals who are living and managing care scenarios for their loved ones and clients.
First a few housekeeping items before we get started. All the lines are muted, and at the end of the webinar there will be an open question and answer session with our panelists. The powerful components of this workshop are a lot of the presented tools to help address the topic of dementia.
The entire presentation is recorded and all tools mentioned and demoed during the webinar will be made available with a complete transcript within 48 hours after the completion of the webinar.
So let’s get started. As we go through the webinar today, we have two very simple goals. We want to understand and manage more of the issues around dementia. We also want to improve the quality of life through education, learning, support, and advocacy. And to help us to do that, we have an all-star lineup today.
Let me introduce our first speaker, Rosemary Kane [SP]. Rosemary is a family caregiver and spouse of Denny [SP] Kane, a dedicated father of four who was diagnosed with early onset dementia at the early age of 51 in 2001. Denny lost a hard fought battle with dementia in late 2008.
Rosemary and her children provided tireless care and support to Denny. Rosemary really elevated to become support group facilitator, advocated, and public speaker for the Alzheimer’s Association.
Today Rosemary resides in Mount Laurel and enjoys spending time with her family and grandchildren. Rosemary, welcome to the webinar.
Rosemary: Thank you, Derek. I’m excited to participate in the Griswold Solutions webinar. Education is important for the healthcare field and especially the caregivers traveling this journey. It’s an honor to share my stories with you all.
Derek: Fantastic. Our next speaker today is Chris Kelly, Director of Learning and Development at Griswold Home Care. Chris is the architect of the the Solutions Series workshops, and in addition to leading all training and education for Griswold Home Care runs the Solutions Series program.
In a previous life, Chris was VP of Health Education. He’s been a Director of Education at the Alzheimer’s Association and has worked at facilities as Director of Activities and beyond. In addition to his passion, we know Chris is very passionate about education and adult learning.
He also plays a mean piano at all company functions, and he has a passion for ’67 Impalas. So, Chris, we welcome you to the webinar.
Chris: Wow, what an introduction. Thank you, Derek. I appreciate that. Hi, everyone. Just really, really excited to be part of a really important webinar. As Derek mentioned, I’ve seen dementia, Alzheimer’s disease from a lot of different angles.
The symptoms are such a challenge for clients, family caregivers, and healthcare providers. I just feel very fortunate to share the next hour with everyone. I just want to recognize Rosemary.
I think as you hear Rosemary’s story, it takes an amazing amount of courage to go through all of this from a caregiver’s standpoint, and then, instead of walking away from the condition, turn around and advocate and educate and be part of a webinar like this. So we really appreciate Rosemary’s time and her courage.
Rosemary: Thank you, Chris.
Chris: Absolutely. We also want to recognize all of you. We have a great webinar in
terms of we don’t really segment based on healthcare providers, clients, caregivers. We want everybody together on the webinar. We want to recognize healthcare providers, professional caregivers, and franchisees for your dedication to clients and families.
We want to acknowledge the dedication and support and all the care that is provided by family caregivers of people with dementia. And we also want to recognize clients, people that are living with the stages of dementia, which are really difficult, and we appreciate your courage and perseverance.
I just want to mention that if you’re new to dementia, either as a caregiver, a professional, or a person with dementia, we’re going to talk about some very difficult symptoms. Very challenging. We want to make sure that you understand that everyone experiences this condition differently.
We may discuss symptoms that a person in your life or that you never deal with. But the goal here is that we talk about all the potential symptoms that could occur. We want to make sure that we set a tone there for people that are joining for the first time or are new to dementia. I just want to really quickly want to talk about what we think is a unique and proprietary process for designing our webinars.
We call it the “Solutions Mining Methodology”. We start by reviewing anywhere between 10-20 peer reviewed journal articles, so we’re getting the most recent findings and research. We identify a theme. In this case, obviously, it was just the exhausting, challenging symptoms of dementia and how to manage them.
We then go to social media, Facebook, online discussion boards, and try to see if this theme is rising to the top, which it was. We then reach out to advocacy and go on the advocacy site to see if their tools and information are aligning with the topic, and then we present our findings as part of the webinar today.
As we’ll talk about now, we have a great activity called brain writing so that we can learn from you. You’ll notice we have a chat that’s on the right. You would click on, we have an orange button with a white arrow, when you click on that a toolbar will come out and you’ll see a chat function.
Brain writing is basically, instead of waiting until the end of the presentation to ask a question or make a comment, we want you to do it during the presentation. If a story is told, or a tool is shared, or you have a story or tip to share, don’t wait until the end. Type it in the chat bar and at the end of the webinar, we’ll make sure that we read through many of the comments.
Let’s start with a basic overview of dementia, just a lot of confusion around the term. It’s really an umbrella term used to describe a number of different symptoms. Dementia can include changes in memory. You’ll notice as we go through the presentation most of the memory loss initially is short-term memory loss, things that have recently happened or have recently been told to a client.
Changes in thinking, attention and ability to concentrate, ability to reason, changes in vision and depth perception, changes in the ability to communicate through language, and also [judgment].
What makes dementia different from issues that we go through, people without dementia, is that when people have these symptoms, it must be severe enough where it’s actually interfering with their daily functioning.
When people have dementia, it’s very difficult to work, it’s very difficult to maintain family activities, paying bills. So that’s basically the combination of symptoms and also when these symptoms occur a person struggles to function independently.
There’s also a lot of confusion around the terms Alzheimer’s and dementia. I’ve heard people say, my mother doesn’t have Alzheimer’s, she has dementia. This is an important slide, in that we’re showing all the different types and forms of dementia.
Alzheimer’s is a form of dementia. In fact, it is the most common form. Each of these conditions could each be their own one hour webinar, so I’m just going to go through them quickly.
Again, we want to make sure that we’re inclusive of all the people that are joining the webinar. Obviously, Alzheimer’s is the most common form. Vascular dementia; where a person might have a lack of oxygen or blood flow to the brain. Lewy bodies dementia, Parkinson’s disease, Frontotemporal dementia, Huntington’s disease, all neuromuscular dementias that have a memory component.
Creutzfeldt-Jakob disease is a very rare but rapidly progressing dementia. A lot of people don’t know, but about 50% of people with Downs’ Syndrome who live to age 60 will develop dementia. Mixed dementia where a person has both a combination of Alzheimer’s and stroke.
Korsakoff’s syndrome, where a person might have low thiamine levels. This is often associated with alcoholism. Basic dementia complex, where a person might have more advanced HIV and also have the component of dementia. Then, sadly, when people have traumatic brain injury from car accidents.
We’ve seen some well documented issues with football players and boxers who have been in a sport where there is consistent head trauma. Hopefully this clarifies some of the terms, that dementia is the overarching category and then there are many different forms of dementia.
We’ve talked about the clinical side, let’s look at the human side. This is an amazing poem written by a person with dementia, showing the insights that a person can have, and also how frustrating dementia can be for the person that has it. The title is “Why not ask me?”
We read: “I’m still here. I can still speak. I’m still strong, not frail or weak. So when you stand there in my house, talking in whispers just like a mouse, just look this way and you will see, I’m still here. Why not ask me? Instead of saying, “Oh, he can wear that hat, and dressing me in some [inaudible 0:10:19] hat, or making me eat food I hate, with me why won’t you debate? I’m no different, can’t you see, I’m still here. I’m still me. All I want is to have a choice. All I want is to use my voice.”
Just an amazing, amazing poem. Sadly a lot of people with dementia don’t have that insight that they can share these feelings. But what you’ll learn as we go through this session, it is that it is those feelings and sensitivity that in many cases generate some of the symptoms that we’ll discuss now.
The first category or type of symptom that we’ll talk about are repetitive symptoms. We have a quote here from a family caregiver, I know I saw a lot in the field. “The questions come over and over all day and night, ‘Where is my mother?.’
I try to be patient, but I end up, ‘Your mother passed away, remember?'” Obviously, the person with dementia doesn’t remember, so there’s some guilt for the family caregiver.
We wanted to talk about why symptoms occur. We know that it’s due to changes in the brain. With receptive symptoms, there are physically two types. There are verbal repetitive symptoms, where a person has a thought, a statement, or a story or a question, that cycles throughout the day and night in their mind and they ask it.
We listed two here that I know happened a lot in the field when I was working as a dementia unit manager: what time is it? You would answer the time, five minutes later, what time is it, you answer the time again, probably louder and slower. “I want to go home”, for those people that are back in time and don’t recognize their environment. It’s very exhausting.
There are also physical repetitive symptoms where in the middle to later stages someone will constantly look around the house and rummage through items, which can be a safety issue. They may tap their feet and then rub their hands. Then in the later stages, it’s actually very common for residents in a facility or a person at home to bang on a table
These are the type of symptoms that can be really exhausting for a family caregiver, and I would argue exhausting for a client as well. The most important point that we hope you take away is that number one a person with dementia cannot control their symptoms.
That by answering questions, by getting frustrated, in many cases we need to remind ourselves that this is part of the disease. Some things that you can do, number one, are there are any emotional or physical needs that the person has? For example, anxiety and fear often triggers repetitive questions. Try to divert them to a meaningful repetitive activity, particularly something that they’ve enjoyed doing in the past.
I know with my grandmother, she loved to clip coupons every Sunday, so when she would ask the same question over and over again and we were tired of answering, we would often bring out coupons, whether it was Sunday or not, we would collect papers. That was something that was repetitive but that was also positive and something that she enjoyed doing.
If you’re working or living with someone that is later stage and they are banging on a table, obviously that can be frustrating, and people could also injure themselves. One of the innovations is to think about a soft object that might be meaningful.
One resident I worked with loved baseball, so we just put a baseball glove on his hand. So he was still banging, but it was something that was meaningful, he wasn’t being injured, and also the sound wasn’t as loud. Also things like dolls or stuffed animals, if the person has progressed back in time.
We have three great tools that we’re offering related to this topic. The first is from the National Institute of Neurological Disorders and Strokes. It’s a great, great informative page around dementia, the basics.
For those of you who are in the home and experiencing repetitive questions, there’s a great brochure from the Alzheimer’s Association that will help you to plan a day and a routine for a person that is in the home living with Alzheimer’s and dementia.
You can see great images around arts and crafts, trying to tie things back to people’s occupation, so it’s very informative.
Then we also have a tool based on a program called ‘Memories in the Making’, and this is a national art therapy program for people with Alzheimer’s and dementia, many of whom never did art in the past. We know that the brain, the part of the brain that enjoys art and expresses art is typically not impacted until the later stages, so art therapy can be very effective.
So all these are around trying to develop a routine, that you can introduce to the person with dementia to try to stop some of these repetitive questions and make life more meaningful.
Let’s just now talk about wandering and movement issues. Again, very common symptoms of dementia. This is again a quote from a person with dementia, “I found myself lost, frightened, and confused about where I was, and I didn’t even know where I was trying to go.” So, obviously very scary.
From a movement standpoint, if someone has one of the neuromuscular dementias that we talked about, there might be fall risk. A person might have tremors, either smaller tremors, or in the case of Huntington’s disease, more gross motor tremors like Huntington’s Chorea.
Let’s look at a little bit on wandering. There are different types of wanderers. We’ve got some neat categories here to help you understand those types. The active seeker, these are people with dementia that have that specific goal. They may be back in time, they don’t recognize their environment, but they want to go home.
Or, they may think they’re still working and if they don’t get to work they’re going to lose their job and not be able to provide for their children. That’s call the active seeker. They want one thing and that’s to get out.
A pacer is someone that is not necessarily looking to get out but they are very restless, they have excess energy and need to move constantly, which can be exhausting for both the client and caregiver.
The explorer is someone that is just very curious, very interested, so anything in their walking path, they’re going to rifle through, and that’s where again, safety can be an issue with medical supplies, cleaning supplies.
Then the final category is what we call ‘the follow’. If you’re a family caregiver or a professional caregiver, this is someone who is so anxious and disorientated that they cannot tolerate being away from you. Going to the bathroom, having any private time can be very difficult.
Some of the action plan items and toolkits include first and foremost, when it comes to wandering, very important to enroll in some of the great emergency response programs and develop a wandering response plan. You’ll notice when we go through the tools that there are two programs that we recommend.
Again, knowing that communication is an issue, are they restless or wandering because of some unmet need. Some of the common things that they struggle to communicate, they might have to go to the bathroom, they might be hungry or thirsty, they may be tired. Think about older adults and how much pain they experience with arthritis, so they might have pain. They might be sick. They might have the flu. Or they might be depressed or anxious.
Physically these symptoms are their way of communicating on that need. Our challenge is to try and figure out what that is. Some people find that if you walk with the person that’s pacing and then gradually stop with them and sit, that that could get them to stop and take a little bit of a rest.
We do recommend that you reach out to your healthcare provider and ask if you could have a home safety assessment by an occupational and physical therapist who could also make sure that your setup is safe, walking paths, remove clutter, and look into any adaptive equipment that might make walking safer for the person.
The Alzheimer’s Association has partnered with MedicAlert, great, great partnership, to develop a program where a person can register with their photo, all their contact information, a description, they get a bracelet with an ID code.
If they’re missing, very quickly that picture is faxed to emergency rooms and law enforcement. There’s a very, very high rate of return when people enroll in both the Safe Return and MedicAlert program.
We’ve talked about the overview of dementia and some of the repetitive symptoms and wandering, and we’re very fortunate to have Rosemary with us. Rosemary has dealt with many of these symptoms, and I know, Rosemary, you and I talked the other day, there were a couple examples that really came to your mind.
One example was when your daughter was really delivering, having her first child, was in the hospital, and you were dealing with wandering and repetitive symptoms. Could you take us back to that time and help everyone understand what that’s like from a caregiver standpoint?
Rosemary: Sure, Chris. Like you said, my first encounter with wandering was in the hospital, awaiting the birth of our first grandchild. Our entire family was present. We all easily filled the chairs in the waiting room.
All the sudden, Denny was missing from our group. We began to panic and started to search the hospital. Where’d he go? Why would he leave? Luckily, we found him outside. The security guard located him. He was not aware of our worry and we safely all returned to the waiting room. This was an important lesson to us all. Denny needed to be in our radar at all times.
Chris: Thanks, Rosemary. I know I’ve heard you tell that story before, and every time I
hear it, it’s very, very chilling. I think, Rosemary, you said that that was really one of the first times that something may be wrong.
Rosemary: Right, yeah. Well, he was actually just recently diagnosed.
Rosemary: We didn’t realize, we were new to it, and we didn’t know that we had to watch him.
Chris: Sure. The other story that you had told me, Rosemary, that I think was really impactful that is more related to the repetitive symptoms is just Denny’s constant desire to want to go out in the mornings. Could you share that with us?
Rosemary: Sure. Keeping Denny in the house was a struggle. He constantly wanted to go out and it was the first question he asked me every morning. I discovered all the stores that opened early and Denny would push the cart up and down the aisles.
We also made many visits to my daughter’s house just so he could have somewhere to go. The problem was that he did not remember. We went out, and he’d ask me to go out ten minutes later after we arrived home. It was really exhausting.
Chris: Just from an emotional standpoint, it’s obviously difficult to do that every morning, but you also capture just the physical exhaustion that a family caregiver experiences when we’re dealing with repetitive symptoms. Thanks for sharing that, Rosemary.
Rosemary: You’re welcome.
Chris: Let’s check now and talk about two additional really challenging symptoms, aggression and agitation. There’s a great quote here from Beth Kallmyer, the Senior Director of Constituent Services at the Alzheimer’s Association, that I think really captures what’s behind the aggression. “If you don’t understand what’s happening because your brain is not functioning, it can be scary. It’s normal human behavior. You might act out or become agitated or violent if you don’t know what’s going on.”
An important note here is that fear is actually commonly a trigger for aggression. Some of the symptoms of aggression, or some of the situations that you might come across, both at the home or if you’re working at a facility, yelling, biting, hitting, cursing, and throwing things. And if you really take this in, these are very primal reactions to fear. Not saying that people aren’t angry.
Obviously, Alzheimer’s Disease can cause depression and anger. But in many cases it’s important to remember that the person is disorientated, has memory problems, and in many cases is very much afraid, which I think Beth Kallmyer was trying to capture there.
We really almost need to be a detective. We know that aggression is trigged by our ability to communicate on that need, so we wanted to give you almost a checklist, so that if you’re dealing with aggression and you notice the person is restless or you’re not able to, you know, probably their life is impacted, so a list of things to look for.
Obviously, pain, could be they’re depressed? Do they have anxiety or stress? Are they getting too little sleep or too much sleep? Both of those could trigger aggression and agitation. Are they constipated? Do they have too little clothing? Has there been any recent change in their living situation, their location, their routine?
And just an important point, that when you have memory loss, and when your cognition is compromised, any change in your routine is really, really difficult. You want to try to maintain the same routine as much as possible.
Do they have vision or hearing problems? Think about the losses that a person with dementia goes through, their goals, their hobbies, sense of control, their relationship with family and friends, their dignity, and just a general sense of loneliness.
Is there noise in the room? Are you pushing them to do things they don’t want to do? Could it be a reaction to medicine? Is the room too hot or too cold? And then, finally, does their clothing fit? All these things, if you or I were to experience, our clothes don’t fit, we go buy clothes, and they fit.
When someone with dementia has pants that are too tight, they don’t know how to tell you, so in many cases those unmet needs come out in aggression. Some of the approaches that can work are, number one, just very simply, constantly reassuring the person that they are OK. These people feel lost, and it can be helpful to hear that everything is OK.
Even when they are becoming aggressive, you want to try to maintain calm yourself. You want to try to speak slowly and listen and figure out what the issues are. Limit caffeine and sugar, particularly at night. Playing soothing music and doing any activity that they would have found soothing in the past can help them to feel more relaxed.
Again, try to identify and respond to any unmet needs that they have, trying to reduce noise or clutter. The number of people in a room, particularly around the holidays, can be a trigger for aggression. Remember a very important point that this is a symptom and not something that they can control.
One caregiver told me, you never win an argument with someone with dementia. Try not to argue or reason with them. Sometimes they can get so difficult that you might have to walk out of the room, just take a break, take a few minutes, and then return, and you might find that they’ve forgotten what was upsetting them and that things are in a much better place for both of you.
Two tools that we’ll talk about, one a great fact sheet that was put out that really talks about what agitation and aggression is, what causes it, and then gives some strategies for caregivers in terms of managing agitation and aggression.
We have a great program called ‘Music and Memories’. If you ask me, this is one of the most innovative programs from the past five or ten years, founded by Dr. Oliver Sacks.
He is asking people to donate iPods, basically downloading music, favorite songs that people have liked in the past, and he’s putting iPods on residents and clients that were basically non-responsive or were not really engaged or connected, and it’s amazing. These people are coming to life. It’s obviously not a cure, but it’s stimulation, and people are singing and talking and making eye contact.
I really recommend, if you go to YouTube and just put in ‘Music and Memories’, there’s some amazing videos that really emphasize the value of this program. We’ve also given you a second fact sheet that talks again about aggression and anger.
Again, our goal here as Derek mentioned, is to try to bring these tools to you versus having you have to go search from them online. Great tools, so we wanted to make sure that we make them available for you.
Rosemary, I know, as difficult as this is to talk about, and I’m sure it’s even more difficult to live through, can you talk a little bit about how aggression and agitation happened in Denny’s case?
Rosemary: Sure. That was actually probably my biggest problem with Denny. He had several outbursts of aggression many times. One occasion that stands out in my mind is my daughter’s wedding day. Now you have to remember that Dennis had early onset, so our children were still in various stages of their lives.
The wedding took place in October, just a little over a year from his diagnosis. After the wedding, we all drove to a local hotel where we had rooms booked to accommodate our family and friends. Denny and I went to our room and he proceeded to get into bed. I’m sure he thought the day was over and was tired.
I proceeded to explain to him that we had to go to the reception, and he did not comprehend this. He became very agitated, and he became very aggressive toward me. Somehow I finally persuaded him to get dressed and then he stormed out of the room and we could not find him. My daughter-in-law finally found him in the lobby and calmed him down, and she and my son somehow got him to the reception.
To this day, I do not know how she calmed him down, but as you can imagine it was a frightening experience. I feared he’d ruin the wedding. Once again, having forgotten the entire situation, he was fine the rest of the wedding, but I was quite shaken.
Chris: Thanks, Rosemary. Again, I know it’s really difficult to go back and to, just the first birth of a child, a wedding, very important times in a person’s life and I can’t help but wonder if he knew these were very important times and a lot of this was just his frustration with his condition. Thanks again for sharing these stories. We’re helping people, but I know it’s very difficult for you.
Rosemary: You’re welcome.
Chris: We’re going to shift now and talk about, again, there are no easy symptoms with dementia. Another very challenging symptom, hallucinations and paranoia. “My mom had Alzheimer’s Disease and also had hallucinations. What I’ve learned is if they aren’t bothering her, let it be. Go along if she wants your opinion or interaction. If they upset her, then you need to try to divert her or possible try medication.”
Just a great quote from an experienced caregiver who learned that hallucinations are very real for the person and that the best thing to do is try to join the person’s world and divert the person’s attention to something else.
Why are people hallucinating? Why is their paranoia with dementia? There are changes in the brain that occur that affect what a person sees, what they feel, what they hear, what they smell. They may see bugs. I worked with one resident in a facility who swore there were bugs on the floor, and the staff was saying there were no bugs there.
We had someone from maintenance who had the great idea to come into his room with an old fashioned bicycle pump with a red tube, and he walked around as if he was an exterminator waving the red tube around. That satisfied the resident for that particular night. We joined his world to resolve the problem.
People may see illusions, seeing a curtain and thinking it’s a ghost or thinking it’s someone coming into their room. And also what’s very difficult for family caregivers is when you’re the dedicated caregiver, you’re taking them to appointments and taking care of them, and they turn around and blame you for stealing their keys or taking their money. Very, very difficult.
I always like to tell the really dedicated caregivers who ask, “I’m doing all this for my mother, why are they doing this to me?”, and the answer is because you’re there. You’re the person that’s there when they’re going through this difficult time. It’s very difficult. The good news is there are some approaches, we have an action plan and some tools that can help.
Again the most important point here is you’re not going to win an argument with them, and that knowing that these hallucinations are very really for them, it’s actually very upsetting for them to hear that what they’re saying and what they’re seeing is not real.
You want to try to join their world and figure out a way to remove the problem, divert their attention to a relevant meaningful activity. Join their world, like we said in the case of the resident that saw bugs.
With hallucinations and even aggression, there are some times where you can do all the things that we’re sharing with you, and use all the tools that we’re sharing, and you really need to reach out to a healthcare provider to talk about medication. Sometimes that is the only thing that can help.
There are two tools here. We’re going to just open one. It’s called Hallucinations and Alzheimer’s. It’s a great page on the Alzheimer’s Association’s website that provides information about why it occurs and gives you some great coping strategies. And again, after the webinar you’ll get this presentation and can click on all these links.
The next symptom is ‘sundowning’ and sleep problems. Again this quote captures from a family caregiver’s standpoint how difficult that can be. Some of the causes of sundowning are changes in internal clock.
Think about what you’re doing if you’re well between 4:30 and 5:00 in the afternoon. If you’re working, you’re closing up shop to go home. If you’re a homemaker, you’re preparing dinner and getting ready for the family to come home. One theory is from 4:30-6:00 if you have dementia you have nowhere to go and nothing to do but you’re body is telling you, you need to do something. That’s one trigger.
It could be from exhaustion or lack of sleep. It could be from inactivity, so we recommend that people stay active and not nap during the day, because that could affect sleep at night. There are theories that lack of light could be disorienting, so we recommend having night lights. It could be a medication side effect. Then even with people without dementia, both depression and anxiety could cause sleep problems.
Some of the approaches that could help: Try to involve the person in the late afternoon/evening activities to fill that need that they always need to do something. Keep them active during the day. Avoid alcohol, caffeine, and nicotine.
Try to recognize and respond to any unmet needs. You might need to ask their healthcare provider if there are any medications that could be keeping them up. Make sure the bedroom temperature is comfortable because they may not be able to tell you if they’re hot or cold.
If sleep problems persists, there is no way that a family caregiver can stay up day and night. The caregiver burden is a huge challenge, so that’s where you need to think about home care, or a caregiver coming into the home. Also, talk to a healthcare provider about medication.
We’ve given you a great tool here about respite care, so if you’re someone that is in this situation, I would visit this page and learn about how you can get more support in the home so that you can rest and sleep if your family member is not able to.
Then, our final symptom, again very difficult for both the client and caregiver are communication challenges. This is was a short but great quote from a person with dementia that described this as “agonizing.” Where they see the word in their head, but can’t say it. In the industry we call that ‘aphasia’.
There are four types of aphasia, expressive where speech is difficult but the person knows what they want to say, so that’s very frustrating.
Receptive aphasia, or fluent aphasia, is where a person may speak fluently, but when the words come out they don’t make sense to you.
Anomic aphasia is where a person has a very difficult time looking at an object and using the correct name for the object.
Global aphasia, probably the most difficult, is where the client can neither speak or understand speech, and in many cases is not able to write. They’re almost closed off from their professional and family caregivers.
Then primary progressive aphasia is where a person has a language disorder that starts in a more mild way and then progresses and gets more difficult over time.
Some great approaches for communication challenges; You want to always approach from the front, smile, to reduce some of the anxiety that they’re having and make sure they know who you are. You can say your name. Get on their level and make eye contact and help them focus.
Given their cognitive challenges, try to use short, simple words and sentences. Only ask them one question at a time and then give them a chance to respond. Try to speak more slowly. Use a gentle and relaxed tone to help to relieve some of that agitation that they have. Give visual cues.
If you’re asking someone to stand up, you could actually model it by standing up when you say the word, and you could also use a hand gesture to help them stand. Avoid [clipping]. Write things down because they might be able to understand the written word. Avoid talking down to the person. Be aware of your feelings and your facial expressions because there are times that they’ll mirror you.
Now, Rosemary, I know that Denny was, as you described him, the life of the party. He was someone that really enjoyed talking and had a lot of great relationships, in fact, had a really close relationship with the mailman that came to your house. Could you talk a little bit about what that was like and how that changed with dementia?
Rosemary: Sure. As the disease progressed, Denny could not find his words. He couldn’t carry on a conversation. So naturally he became withdrawn from social situations. I believe he was embarrassed. One instance was his friendship with our mailman. They’d often have good conversations.
Then I noticed when the mail truck would come, we all know that distinctive sound. Denny would wait until he left before he went out to get the mail. A normal friendly routine became a burden to Denny and he eventually stopped getting the mail.
Alzheimer’s patients know their limits. They try to hide their loss of memory and become isolated from the world. A man of many words lost his greatest asset, the gift of gab.
Chris: Thanks, Rosemary. Again, just thinking about the relationship that a spouse has, you’re communicating and you have this great relationship, and dementia changes the way you communicate. I think as you hear Rosemary share her stories, it shows the importance of adjusting. That if you can’t communicate by words, that there’s always ways to communicate by touch.
When you spend a lot of time with someone, a lot of times you learn their mannerisms and can understand their issues and what they’re trying to say. Thanks again, Rosemary, I really appreciate your stories.
Rosemary: You’re welcome.
Chris: Let’s talk if we can, we’ve talked about some challenging symptoms. One of the great aspects of this webinar is that we have an opportunity to capture the many different healthcare providers that really support people that are dealing with dementia. We’ve given you what we feel is the greatest care team, particularly if you’re a person living at home with dementia or a caregiver.
Home care from a respite standpoint, one of my pet peeves is that family doctors and family practitioners are attempting to diagnose Alzheimer’s and dementia. It’s very important that people are referred to specialists like they are with heart disease, lung disease, cancer.
The specialists would be neurologists and geriatricians or geriatric psychologists. The family doctor and nurse practitioner and nurse can play a huge role in helping people to access services and also helping them with medical and psycho-social needs.
There are times where no matter what a caregiver does, the best surroundings and environment for a person with dementia is in a residential care center. Have a hospital in place you go, especially when there are health emergencies. Geriatric care managers and social workers can do really great home assessments and help people connect with resources.
Physical therapy and occupational therapy, speech therapy, we’ve talked a lot about communication challenges and falls and movement issues. Rehab is a huge component of dementia and people can improve if they have the right therapist that they’re working with. The area agencies on aging are part of the government organization infrastructure to support you. The family and client advocacy, we’ve talked about the Alzheimer’s Association, the Alzheimer’s Foundation of America.
Back on the slide where we talked about the different types of dementia, we’ve given you links to all the organizations related to those conditions. Support groups, we’ll get into in a minute, are very important for families and clients. Also, Adult Day Dare, just from a standpoint of respite and making sure that a person with dementia has quality of life and activity and engagement.
Just one slide capturing all the different team members of the team. And then from a treatment standpoint, we’ve talked a lot about the non-medical treatment, some of the practical solutions and tips that you can try.
This slide really gets into some of the categories of treatment. Validation therapy was really pioneered by an amazing women by the name of Naomi Feil, who basically said, join their world.
If they think it’s 1930, it’s 1930. We need to adjust to them. They can’t change, but we can. There’s also an approach called [0:41:53] and that is where, when people are in the later stages and really can’t communicate verbally anymore, that you can provide them with items that have different textures and aromas.
You also can incorporate music, and that is called sensory stimulation, that’s what we call that in the field. There are also complementary or alternative approaches. We talked about music and art, dance therapy, tai chi has been shown to increase mobility and also relaxation, particularly for people with Parkinson’s, Huntington’s disease, and some of the other neuromuscular dementias.
A lot of other research currently going on in terms of the benefits of antioxidants and diets. All these approaches are currently being studied through the National Association of Complementary and Alternative Medicine.
From the standpoint of medicine, obviously side effects are always a concern when a person has cognitive issues, but there are FDA approved medications for dementia that can help. And then there are medication that we use to treat symptoms, like anti-psychotics for hallucinations and aggression, antidepressants for depression, anti anxiety medications, and also anti-convulsants.
It’s very important that you work with your family doctors and then also the dementia specialist, neurologist, or geriatrician to make sure that you’re on the right treatment regimen.
Then finally, the support groups. I can’t say enough. I’ve been a facilitator for years, and just seeing the power of support groups in helping people that are trying to cope with this really difficult condition.
We’ve given you two links here. If you haven’t been to a support group, both the Alzheimer’s Association and the Alzheimer’s Foundation of America offer a great navigation where you can actually go in and put in your ZIP Code in the case of the Alzheimer’s Association and it will actually serve up a chapter that serves your area, and you can find your support group.
And then the Alzheimer’s Foundation of America, you actually go into your state and you would click on your state and find information related to support groups and support services in your area.
Now, Rosemary, I know that we were together in a support group for many years, and that motivated you to actually start a support group and be a support group facilitator.
For those people that are part of the webinar that might be reluctant to go to a group or might wonder what happens in a group, could you just help people to understand what support groups have meant to you?
Rosemary: I can’t say enough about the support groups that I attended. It’s your lifeline. I encourage you all to join today. Coping with Alzheimer’s is a lonely life, and those who know your pain can understand this. Your fears and concerns can be reduced by attending these meetings. Get involved. Get involved with Mr. Alzheimer’s. He’s our enemy. We want him banished from this earth.
Be your loved one’s advocate. Participate in the Walk to End Alzheimer’s. Attend the advocacy trip to Washington and let your voices be heard for yourself, your children, and grandchild.
We need to find a cure for this disease, and the hope stands with all of you. The support groups and the Alzheimer’s Association were tremendous for my family and I. I don’t think we could really survive this disease without them.
Chris: Thanks, Rosemary. I think it’s worth mentioning, especially for the healthcare providers, that when Rosemary and her family approached me at the Alzheimer’s Association, the issue was that when they went to support groups, there were no groups where you would find someone that was at the age where they were getting married, or that they haven’t had children yet, just starting to have small children and starting a family.
Most people that were in the group were older. The average age of Alzheimer’s is anywhere between 70 and 80 years old.
Chris: This should be, hopefully, this sort of inspires the groups out there and the providers out there to realize that there are people out there with early onset, and if you’re someone that is interested in starting a support group, the Alzheimer’s Association and Foundation of America offer great training programs.
I think we need to increase awareness about early onset, and I think there needs to be more support and information and advocacy out there for people who are at that point in their lives where they’re still, in Denny’s case, were the breadwinner, still very vital, still working.
A much different dynamic then when someone, not to minimize Alzheimer’s when it typically happens in later life, but just to acknowledge that it’s very different. Even today, Rosemary probably agrees, that there’s more that we can do for awareness and support.
Rosemary: Correct. Absolutely. Although I have to say that we’ve come a long way since 2001, and I’m happy to see all the progress.
Chris: You’ve been a big part of that Rosemary.
Rosemary: Thank you.
Chris: Just to close before we do our key takeaways, again, I just want to acknowledge how great it is to have a caregiver that’s got your experience on the line. If you were to share just one piece of advice for the healthcare providers, for the family caregivers, and for the people with dementia on the line, what would you share that we haven’t talked about yet today?
Any advice for the people that might be dealing with this for the first time?
Rosemary: Well, it’s really scary, but just be strong. Know that anything that that person does, it’s not really them. They’re not being aggressive toward you. They’re just scared and frightened. Just get support from your family and friends. Don’t do it alone.
Chris: Awesome. Great advice. Thanks again, Rosemary.
Rosemary: You’re welcome.
Chris: We always like to conclude with some key takeaways, some things we want to make sure you remember. We’ve covered a lot of information in a short time. First point, very important, is that people with dementia cannot control their symptoms. If you think back to the poem that we opened the webinar with, I think, I was a professional caregiver and a family caregiver for my grandmother, and I got frustrated.
When they repeated questions, I would say, “I just told you.” It’s human nature. We all have our level of tolerance, but that if you sort of keep top of mind that if someone has heart disease and they have chest pains, that’s a symptom. We would never tell someone to stop having chest pains.
If someone has lung disease and has shortness of breath, we would never be frustrated with them for having shortness of breath or tell them to stop having shortness of breath. The sad part about dementia is that their symptoms frustrate the people that love them and support them and the professional caregivers that are so dedicated to them.
That’s why support groups are so important so that can give you the energy and the information so that when you’re dealing with the symptoms you can be as supportive as possible. It is a fact that they cannot control the symptoms that we talked about today.
Number two, symptoms are often triggered by unmet needs. Very important point. If you have pain or the flu or were worried that your children were missing or that you needed to get to work, and you couldn’t communicate, who wouldn’t wander? Who wouldn’t be agitated? Who wouldn’t repeat the same question over and over again? One of the challenges for families and for healthcare providers is to try to figure out without language what the issue is.
It’s a lot of trial and error. I liken it to having a key ring with 100 keys and one lock, and you have to keep trying keys until you find the one that works. But the more experience you get doing that the better you get at it.
It’s important to surround yourself with dementia experts and also peers. Rosemary captured the importance of being in a room with other people that are going through the same thing that you’re going through.
Also, I think dementia gives you a sense of helplessness. I know I felt that as a family caregiver with my grandmother, and there were days as a professional caregiver where I felt no matter what I did, how long I worked and all the skills and training, that the condition still gets worse, which is frustrating.
The good news is there are things you can do to fight back. Rosemary and her family could’ve easily turned away from dementia and gone in a different direction, but they chose to be advocates, they chose to be speakers for the Alzheimer’s Association, and they chose to engage in support groups.
You heard from Rosemary how important those things are, so if you are out there feeling helpless, Griswold and the Alzheimer’s Association, the Alzheimer’s Foundation of America, and all the advocacy groups for the different types of dementia are out there and they need your help. They need people to join their army and fight this horrible condition.
Derek: Fantastic. Thank you again, Rosemary and Chris. I know our family recently
had our grandmother diagnosed with vascular dementia, and seeing her dementia symptoms increase and knowing that she would continue to need dementia care, I know what our family’s living with today, and we are constantly seeking resources. So thank you to Chris and Rosemary.
I can’t wait to share these resources with my own family after the webinar. Now’s the time to open up the webinar for questions and comments to our panelists. We already have a list of a lot of questions and comments.
If you’re on the phone today and maybe you have a question for one of panelists, or maybe you have experience supporting a loved one with dementia care. Maybe you have yourself a tip on how to manage one of the challenging symptoms of dementia. Maybe you have a question on the signs of dementia or any of the stages of dementia as well, and our panelists are here to answer any questions regarding those topics.
We’d also like to share any of your stories and any of your resources that you’ve learned managing the challenging symptoms of dementia. With that, we’re going to compile a few questions and answers, so please type those into the go to webinar panel by clicking the red or orange arrow, depends on your screen.
If you click that the panel should open up and you can you type the questions into the comment and questions panel which will go directly to our panelists. We have a couple of housekeeping questions here.
Let’s see, we have, looks like Saba [SP] has asked, can this be printed out. I think Saba might have been referring to one of the tools that we were demoing during the early part of the webinar. All of the tools can definitely be printed on your computer, so we’ll include those links in the recap to your email.
If you’re also referring to the slides, we will send the slides out as well immediately after that you can print out. So thank you Saba for attending.
Let’s see, we have a question from Barry Gripped [SP], and Very asks or says, “It is common for those with dementia to want to go to the bathroom extremely frequently. In my experience, every fifteen minutes. Why? Is this the wandering aspect of the disease?
Chris: Great question, Berry, I agree. I think there are some people with dementia that, it’s a repetitive symptom, so they might not actually have to go to the bathroom but they might more need to walk around and walk into the bathroom.
There are also residents and clients with dementia that are taking medication like Lasix [SP], they’re taking a medication that actually causes them to go to the bathroom more frequently, which can be a challenge because they need to go but it is definitely a lot of work and exhaustion for the family and also for professional caregivers.
It can definitely be a wandering aspect if the person has to use the bathroom and they’re not able to tell you. The sign for me was not only were they wandering, but also a few people, a client wandering and opening doors and looking around. That was usually a sign for us as professional caregivers that they might need to go to the bathroom. Great questions.
Derek: Fantastic. We have a lot of questions that keep coming in. Again, type any questions, comments, experiences, or stories into the chat bar. Let’s see, our next question/comment comes from Margie Foster.
Margie wanted to let the audience know that another suggestion when asking a question to client with dementia is to ask a question that can be answered with a yes or a no. This makes it easier for the patient to respond, and then they often elaborate. So, Margie, really appreciate that. Great tip.
Our next question/comment comes from Cindy Fray [SP], and Cindy has a comment about validation of dementia. Cindy comments, “I think it is important to say that mid-[0:55:37] states to go where they are. However, do so in a way that you are not using a therapeutic lie in the process. It is important to know how to effectively go where they are in a way that does not jeopardize the trust in a relationship with the caregiver. Find the experts and validation to learn how to do it in the most helpful way.”
Chris: Great point, Cindy. I do know from my days at the Alzheimer’s Association that there are some cases where a person has no choice. For example, when a person says that they’re looking for a family member who’s passed away.
In those cases, we’re recommending and I think it does align with Naomi’s theory around validation, rather than constantly telling them that the person passed away, which can often cause grieving as if this is happened for the first time, try to divert their attention to something different.
I think you make a great point, when people are in the earlier stages, you want to definitely try to be as honest as possible. If you’re not, then they do lose their trust in you.
Q: Great. We have a question from Michael Asmong [SP], and Michael asks, “Can you explain sundowning in greater detail?”
Chris: Sure, Michael. So sundowning, the word sundowning came from the symptom where we would notice in a facility and in the home anywhere between 4:30-7:00 in the evening a person would get more agitated, more restless.
I know in a facility many people would get their coats on and come to us and say, it’s been great, the food’s terrific, how much do I owe you, where’s the bus. Tthere’s a lot of restlessness that tends to occur within that time period.
Again, we’ve talked about that there are different theories as to why it occurs. From my observations, I think it’s a time that people always had somewhere to go. It’s a time that people have always had something to do. Now that they have dementia, it’s the caregiver making dinner, it’s the caregivers in the facility preparing the meal, and they’re looking for things to do.
Obviously, too, it could be the theory around loss of light and the fact that it’s later and they’re more exhausted. The challenge is just that during the late afternoon and evening it seems like there are some clients that get more restless and more agitated.
That’s really what we’re trying to communicate about sundowning. When we send the presentation out we have a couple links that you can learn more about it. Great question. I’m hoping that helps.
Derek: Our next question/comment comes from Madeleine Best [SP]. Madeleine wants to state, “My mother lives on her own and is developing symptoms of dementia. We are struggling with how to help her when she insists that she is fine and needs no help.”
Chris: Yes, Madeleine, that’s really, really challenging. I’ll give you an answer and then maybe we could also, I know Rosemary has dealt with this as well. Just imagine the denial when you first hear that you have Alzheimer’s from a family member.
There are some people with dementia that have insight into it and when they hear it they just want to deny it, thinking I won’t look at it and it will go away. They don’t want to deal with it because they know on some level what the long term road is going to be.
Sadly, there are some people that due to dementia itself they absolutely can’t process the diagnosis. It may appear to you as the person is being difficult or doesn’t want to accept that they have dementia. In some cases they can’t accept it. The part of the brain that would allow them to process it has been damaged.
In the case where they do understand, I think education and support for people in the early stages is really, really important, and the Alzheimer’s Association has some great early stage support groups.
I’ve seen people who were in denial go to those support groups and be with other people like themselves and really come around. I just want to emphasize that sadly, there are some people that never get that insight.
The challenge for the family caregiver is that you have to work, include them as much as possible, but still do what you need to, to make sure that they’re safe.
Rosemary, I don’t know if you’ve dealt with this, but do you have anything else to add? Did you ever have a discussion with Denny that he had Alzheimer’s?
Rosemary: I was just thinking, has her mother been diagnosed by a doctor, or are they just presuming she has it? Maybe the doctor can explain that to her, and maybe if she hears it from her and not from a family member that would be helpful.
Chris: Great suggestion. If you want to respond to Rosemary’s question that’d be great, but if not, I think that’s another great piece of advice. Sometimes it’s easier to hear, if the person has insight, it’s easier to hear that type of news from a health care provider. Rosemary, the individual responded, my mother won’t let us talk to her doctor.
Rosemary: Oh my.
Chris: Madeleine, given the challenge that you’re describing, it’d be great if you could reach out to me, I’ll give you my email address. It’s firstname.lastname@example.org. I’d be happy to help you along the line and send some additional information. What you’re experiencing is really, really tough.
Derek: Great. Thanks for your courage in asking that question, Madeleine. Let’s see.
We have a few more questions. We just have a comment from Ashley Heards [SP], I learned so much today. Ashley, thanks so much for attending as well. We’re learning from you as well.
We have a question/comment from Patricia Grenier [SP], “A client’s mom was recently diagnosed with Alzheimer’s. She said she can’t live with this disease, and one of her children is insisting on telling her that she does not have Alzheimer’s”. Well, that’s a pretty difficult situation, but how should this be handled?
Rosemary: Yes, great. Again, very sorry that you’re having to live through this. I think it’s just an absolutely normal reaction to hearing this kind of diagnosis. I think that the relationship with your neurologist or doctor is really critical and that there’s an education component.
I do think that when someone has depression, when they do have insight into the diagnosis and have this sort of sense of hopelessness, support groups can play a huge role so that they can realize they’re not alone.
I would recommend support groups, I’d recommend a lot of education and support from the doctor, and then I would definitely reach out to both the Alzheimer’s Association and the Alzheimer’s Foundation of America to find other was for her to feel more educated and involved and also to provide more support for you.
Derek: Great. A couple questions left here. A question from Jack. Jack asks, “How do we know when it is not safe to keep a person with dementia in their home, and it’s time for a residential facility?”
Chris: Jack, I hate, that’s a very tough question. When I was with the Alzheimer’s Association, we used to say you never know someone is a wanderer until they wander. Once someone has wandered that first time, I believe they can still stay in the home if you register in the MedicAlert safe return program and they have a bracelet and you have a plan in place for if they wander.
But I think it’s important to know that there does come a time in many cases where the home does not look familiar anymore. You basically have to stay up all day and night to maintain safety for the person in the home, and at that point it’s actually more therapeutic and more healthy for them and for you for someone to benefit from the safety, security, and experience of a facility.
There are great assisted living facilities. I worked in long term care, nursing homes, you tend to hear nursing homes in a negative way, but there are great nursing homes, great staff, so there are just times where the home is no longer the most therapeutic place. We recommend that you reach out to the geriatric care manager that can actually come out and do a home assessment.
Occupational therapists and physical therapists can do a home assessment. If you talk to your family doctor, they can order those consults. I would definitely defer to their recommendations once they come in and do an assessment. I would never take a recommendation over the phone.
Derek: Fantastic. We’re getting toward the end of our time, so we have a couple comments and tips from the audience. Tip from Laura Richert [SP]. Laura says, “I would like to echo the importance of music as a method of calming and soothing. My father, who was a jazz clarinetist since he was a boy, found such comfort in listening to CDs.
“We try to have music in their home all of the time. It is also an area of memory that has not been compromised. Most recently, a support care person we had spent the entire day with, with my dad spent all day organizing all of his CDs. My dad loved it. Thank you so much for all this informative information.”
Laura, thank you for sharing your story. We also have a couple more comments. One is from Debbie. Debbie says, “I am the caregiver here, referred by Griswold Home Care. I have my 89-year-old dad out of state. Do you know what the best thing to say to him when I call every day? I call him the same time every day, and I’m planning on seeing him next week. It’s been about a month since I’ve seen him. He also suffered from a stroke following his dementia.”
Rosemary: I think, even if someone has dementia, you have to remember that they’re still who they were and that the discussions that you’ve always had, the topics that you liked to discuss, the topics that are the most meaningful between you, I would still have those same discussions.
When we send out the presentation, we give you some tips on how to have a discussion and communicate in a way that might be easier for him to understand the response. You might want to use fewer words, talk slower, but in terms of the content, I think, what we’ve learned from Rosemary and all the content today, he’s your dad.
All the things you’ve talked about in the past will still be meaningful for him. It’s just you might have to communicate a little bit differently.
Derek: Fantastic. We’re about toward the end of the time, but we have a couple questions/comments from Tamara, Patricia, Ashley, Olga, Laura, and Kine [SP]. We’ll make sure to follow up with you after the webinar.
We also have a few folks asking for Chris and Rosemary’s information. We’ll make sure we can connect you with them right after the webinar as well. Absolutely. Absolutely. We are at the end of the question and answer session.
So again, we want to thank Chris for all the Q&A, as well and all of our presenters. Thanks to Rosemary as well. And thank you for allowing Griswold Home Care to sponsor this webinar.
Griswold Home Care is a purpose driven care services company. Our founder, Jean Griswold, wife of a Presbyterian minister, founded Griswold Home Care after her own diagnosis with Multiple Sclerosis.
Today, Griswold Home Care supports aging adults in need with personal care, companionship, and housekeeping services to remain safe and independent at their own home. Our passionate directors and staff refer caregivers, and standards excellence drive quality of life and outcomes across more than 150 offices in the US.
Again, we thank the audience and our speakers, Rosemary and Chris, for sharing their stories and their tips. All the demos, tools, and the recordings will be available after the webinar. We also want to thank the audience for your interest in learning and sharing what you’ve learned in your experience and challenges with dementia.
The webinar has now concluded. Have a great week.
For more information, please review our Dementia Resources.
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