Interview: Living with Dementia

 

Dementia is a serious illness affecting a growing number of people worldwide. It is a neurodegenerative disease that leads to a loss of memory, understanding, and mental clarity. Dementia usually occurs in old age, but there are also cases of early-onset dementia in younger people.

Symptoms & Types of Dementia

The symptoms of dementia can vary greatly from person to person, but generally include a deterioration of cognitive abilities, such as problem-solving, language, memory, and concentration. The disease progresses over time, affecting more and more areas of the daily lives of those affected.

There are different types of dementia, with Alzheimer's being the most common. This disease typically occurs in old age and leads to a gradual deterioration of the brain. Other types of dementia include vascular dementia, caused by a stroke, and frontotemporal dementia, which affects the areas of the brain responsible for personality and behavior.

There is no cure for dementia, and treatment aims to alleviate symptoms and slow the progression of the disease. An important aspect of dementia treatment is supporting relatives, who are often overwhelmed and face many emotional challenges. It is important that they have access to information, training, and support to provide optimal care for their loved ones.

Preventive Measures

There are some things people can do to reduce the risk of dementia or slow the progression of the disease. These include regular physical activity, a healthy diet, and sufficient sleep. It is also important to stay mentally active by, for example, regularly solving puzzles, learning, or playing an instrument.

Overall, dementia is a serious disease that affects not only the individuals concerned but also their relatives. It is important that more research is done to better understand the causes of dementia and develop new treatments. At the same time, we should all take steps to reduce our own risk and maintain our mental health throughout our lives.

Tips for Dealing  with Dementia Sufferers

Dealing with people with dementia can be a major challenge, as their cognitive abilities are impaired and they often have difficulty expressing themselves and coping with everyday tasks. However, it is important to note that each person with dementia is unique and has individual needs and abilities.

Here are some tips that can help make dealing with people with dementia easier:

• Patience and empathy: It is important to show patience and empathy when talking or interacting with a person with dementia. It can be difficult to put yourself in their shoes, but it is important to remember that they are not deliberately having difficulties, but due to their illness.

• Simple language and clear instructions: Use simple words and clear instructions to facilitate communication. Avoid complex sentences or questions, as they can be confusing.

• Repetition and confirmation: People with dementia often have difficulty remembering information. Therefore, it can be helpful to repeat things and confirm them to ensure they have been understood.

• Safety and comfort: Make sure the person is in a safe and comfortable environment. Reduce noise, light, and distractions to minimize distractions and reduce stress.

• Offer activities: Offer activities that are tailored to the person's needs and abilities. This can help them

  maintain mental abilities and give them a sense of purpose and meaning.

• Respect dignity: Treat the person with dementia with respect and dignity. Avoid infantilizing or ignoring them.

• Offer support and help: Offer support and help when needed. This can range from simple tasks like getting dressed to assisting with meal planning and medical appointments.

Overall, it is important to adapt to the needs and abilities of the person with dementia and to focus on patience, empathy, and respect . Through these approaches, a supportive and positive interaction can be created with people with dementia.

 

Interview with Julia Bernsee

 

Dear Julia, thank you for agreeing to an interview with us. You have a mother who suffers from dementia, and you face new challenges every day, but also beautiful moments with your mother, which you also share on social media. Since our emergency bracelet also appeals to relatives who are worried about their parents, we are very pleased that you are sharing your experiences with us and our community. Please introduce yourself and perhaps tell us a little more about yourself and the mother of forgetting.

You're most welcome. My name is Julia Bernsee, I am 53 years old and I live in beautiful Schleswig-Holstein. I don't come from a nursing background or any similar field; I'm a coach for people in transition. I have a mother with dementia and I stumbled into this more or less by accident; I didn't consciously intend to dedicate myself to this topic. I had to, because it suddenly affected me. So it happened that now, and by "we" I mean myself and primarily my little daughter, we have really dealt intensively with the topic of dementia.

However, I would like to say beforehand that everything I report here comes from my own experience and really refers to my mother. What I have found is that there is a really wide range of situations, behaviors, and so on. So bear with me, I'm talking about my mother here. I noticed back then, about six years ago, that I wasn't the only one who had a mother or father with dementia. And then I started playfully reporting about it on Instagram in the form of small video clips. It really took off completely. Suddenly I had 40,000 followers within three months. These videos were watched millions of times, and I actually thought to myself - wow, this is a topic that not only affects me, but it's a topic that the world also needs to know about. Then this snowball effect started, and now I have a consultation phone where people can call me for free and just talk about everything that's on their mind.

Together with a colleague, we are currently developing a concept. We want to create homes for people with dementia, really small residential units where this symptomatology, this disease, can be completely addressed, and of course, what shouldn't be missing is your emergency system. That's what's on my mind right now!

Very gladly! What you have achieved in such a short time is very moving. You provide much-needed support to many relatives who are in a similar situation. In the videos you post on social media, you deal with your mother very casually, you laugh a lot, and you can tell how much you care for her and how well you do it. I can imagine that this diagnosis was very challenging for you as a family. Do you have any tips for relatives on how to generally react to the topic of forgetfulness and, at best, how to deal with it?

Just now, as you say that, the thing about the diagnosis—yesterday I had a conversation with a daughter whose mother is affected. Up until now, the mother was just a little confused, always forgetting things, but everything went its course. And then they went to a doctor and the lady asked: "Dr., tell me, do I have dementia?" The doctor said "Yes," and from that second on, the lady felt so extremely sick, restricted, and it was practically, I don't want to say like a death sentence, but a judgment was passed. That makes me wonder how good it actually is when it's diagnosed, because what do we get out of it in the end? There is currently no miracle pill in conventional medicine, there's not really much you can do, and we all know that when doctors tell people they only have two weeks to live, by chance, people die on the 14th day. And we know what the mind does to matter, and I actually find it more pleasant to have an idea. For example, relatives can have a confidential conversation with the doctor, but not say "Mom, you have dementia," or "Dad, you have dementia," "You are sick now," because they will live up to this expectation that they will fall into forgetting, and that is a big problem. And in fact, my mother was never really diagnosed with dementia. Well, they did, but they would have liked to do more - let's put it that way - I nipped it in the bud. My mother was in geriatrics for a week at the time, and they wanted to see if it was dementia or Alzheimer's. There is a difference. The diagnostics are tough, so they really take cerebrospinal fluid from the spinal cord, and in the end, you're not any wiser. If I know it's Alzheimer's dementia, where's the problem or what's the difference? That's why we stopped it prematurely at the time, but of course I know that my mother has a brain problem. I think if she went for an MRI, the brain organ would be severely damaged. And that's why I wonder if it's such a good idea to have it diagnosed. But what we found out back then was that we should have recognized it much earlier. We didn't recognize the signals, and that's basically the dangerous thing about it. People with dementia feel that something is wrong with them, I suddenly can't remember this anymore, I can't remember that anymore. Where do I actually live? What's the name of the street? And they can hide and mask that very well for a relatively long time, sometimes longer, sometimes shorter. Therefore, if you don't have your mother, your father in your hand every day, or in front of your eyes, then it can happen that if you haven't seen them for a month or two, you think, wow, what happened here, and then of course the damage is already done. That was actually the case with my mother too.

So, I don't know, you probably heard in my podcast that I said I drove onto the farm one day and saw my mother cutting the huge ivy hedge with nail scissors, and that's when I knew something was wrong. Because the lucid moments are always there in between, you can't say she's completely demented now. It's a huge process that's taking place, and it's very difficult to say. What I would definitely recommend for all relatives is, if they notice Mom, Dad becoming confused, please don't correct them or constantly correct them, and don't scold them or demoralize them, but perceive it and see how you can provide support. That's totally important, because often it's also the case that people say "Come on Dad, I've told you this ten times already, don't keep asking the same question." They don't do it on purpose, that's very important to know.

You also mentioned aggressive behavior in your podcast, which I found very interesting. That was even before you had a diagnosis or knew what was really behind it. It's somehow frightening when the loved one becomes aggressive, without any recognizable reason. How would you recommend other relatives to act in this case?

Yes, that's also a very, very difficult question, because sometimes, when my mother, let's say, when her fuse was very short again, she would become so mean and hurtful that I sometimes just left. I couldn't stand it; the things she would sometimes throw at me, I had to breathe very deeply and constantly remind myself – and this might be a little trick – constantly remind myself that it has nothing to do with me. Easier said than done. But it really is. This anger that comes up, I'm just the punching bag in this case, I'm just the target where it has to go, because in the end, they are so angry and so sad about what is happening right now, and actually, if you could in that moment, you should say "Come here, Mom, let me hug you, I'm really sorry" or offer compassionate words.

But it's not possible, because they are really stupid in that moment and they don't give you a reason to be nice and friendly, but it is an anger and a sadness that comes up in this case about this situation that cannot be changed. If you understand that, then you can also understand the anger behind it. I would be angry too, so it's already like this today, you probably know it too, you've forgotten something and you're desperately trying to remember what it was, you already get a little angry and then it's like that. Suddenly they become aware of the implications. That makes you angry, it has nothing to do with me.

Your message is also "Take care of your happy life and your health". How do you manage to relax as a relative and find peace despite all these challenges?

Well, I mean, the situation I'm in now is totally elegant. My mother is well accommodated, but when we talk about the situation where she lived with me for seven months, where we were really together 24 hours a day, it was sometimes so bad that I asked myself, when it wasn't yet clear how long it would take until I found the right place for her, I sometimes thought, if this continues, only one of us will be left, either her or me. So, if I had known that it was my fate to care for my mother until the end, I don't know how I would have gotten out of it. Anyone with small children knows what it's like not to get enough sleep. I am a person who needs to be alone a lot, because I always have to work through a lot of thoughts in my head, and this constant state of being on alert, constantly being watched, and also constantly not doing things right. We had wonderfully beautiful times, but on the whole, it's of course an absolutely exhausting undertaking. Your whole life changes in an instant. When I had visitors, she crashed everything. People left relatively quickly after a while because my mother simply made sure that the atmosphere wasn't pleasant. But when I was working, at that time everything was online, when I was doing online coaching, she would suddenly jump into the picture from behind and scream like a madwoman. That means I only worked at night when she was asleep.

When I say, take care of yourself, what I really took away from that time was healing my inner child, that was the main concern and the most amazing result ever, because my mother and I still had many unresolved issues. My mother is a very intense woman, I am an intense woman. We have many issues that we clash over. I used that time when she lived with me to heal my inner child. Although I didn't always have an adequate conversational partner, I spoke out things that had been weighing on my soul for years as a child. That was very healing for me. For me, it was also healing to decide that I would now find a nice place for her, because otherwise I would go crazy here. Sometimes I took turns with Pauline, my daughter. I would just run off for three hours to my horses and recharge there, or I would just go for a walk, do an hour of yoga, or meditate. I really took that time for myself, because otherwise I would have gone mad, and she wouldn't have benefited from that either.

 

 

What I experience in my conversations is that people, especially women, often have such a bad conscience when they say, "I can't anymore, but I can't leave him alone." Yes, you even have to, so that you have strength for care, so that you have love, so that you have energy, so that you have joy of life. No one benefits if we sacrifice ourselves. We don't deserve punishment or anything. So sometimes I think, I don't know where these beliefs come from, but sometimes people think, "then it must be my fate to sacrifice my life for the care of this person." "I owe it to him or her." We don't owe anyone anything! My biggest message is simply: Get help! There is help, there are possibilities, but sometimes people don't dare to pick up the phone and just call their health insurance company to inquire what they can do. And that's why it's actually my mission to provide education there too. If I feel like my mother, father, partner, they are somehow strange, who can I turn to, what are the signs of dementia and so on.

I find it very impressive that you are so involved and want to educate other relatives. You also mentioned in your podcast, now that we're on the topic of accommodation, that you had a very bad experience with a nursing home, and I'd really be interested to know what hurdles there were and whether the requirements for a nursing home for people with dementia are different from those for other illnesses?

I can't really judge other illnesses, or I don't want to presume to. What I have noticed, however, is that a person with dementia sooner or later exhibits behaviors that can be very strange for a normally aging person. I mean, they do silly things. People with dementia eventually start doing silly things; they pick up the sugar shaker and hold it to their neck, or they take a spoonful of mayo and stir their coffee with it, or something like that. They start eating with their fingers, anything can happen, and I know this because in the home where my mother was, it was a mixture of normally aging people and people with dementia. And if they all sit together at one table, that is, of course, an unbearable situation for the normally aging people.

And that's why I would always advocate for keeping people with dementia among themselves, because then you can, of course, respond to their needs much better. That would be my advice.

What were the hurdles in care at the nursing home?

People with dementia often start to wander at night, and then it can happen that they go into other rooms and suddenly wear other people's clothes, and so on. All of that happened, and that's why it's difficult. I wouldn't mix them. I still remember when my mother was really at the beginning of the illness, she was still relatively clear-headed, a lady would always roll in with her wheelchair, no matter what time of day, and she always had about 20-30 necklaces around her neck; it was her loot that she had conquered from the other rooms, and then she started helping herself to the cupboards. My mother was incredibly upset about that. It's also a silly situation, it was also a bit strange somehow, but it happens, and if they are mixed together so amusingly, then conflicts can really arise.

Your mother is now excellently accommodated; do you have any tips on what requirements one should have for selecting a nursing home or how to find the right nursing home?

Well, generally, it's not easy at all because you can't draw from an abundance of options. That's the big problem; we can't just pick the nicest one out of 20 homes. So, compromises always have to be made. That's very important, but for me, it's important to know what my mother would have liked when she was still mentally healthy, which home she would have chosen herself. That was so important to me, and of course, even if she doesn't go for 20 km walks in nature now, I know it's nicer for her to look out, see trees and greenery, than to be in some city, that was clear. Then, I think, for someone with dementia, as small as possible, as manageable as possible. Short distances, few people, and care staff who work shifts for as long as possible. I find it really nice with my mother. They have the same person for a long time, I think 12 hours straight. And what is important for a person with dementia is routine, that they can rely on one thing, so you can't say – today we're here, tomorrow we're there. That completely throws them off.

So I find this smallness very, very nice. Then for me personally, and also for my mother, it is very important to have as few chemical additives as possible. In the first home, against my information, against my will, my mother received a lot of medication, and it was clear to me that I had to keep an eye on that, that would also be my tip. Please make sure that if your relatives are to receive pills or medication, you are the first to know about it. My experience is also that people in nursing homes arrive with their heads held high and after two weeks they sit in the feeding room in a wheelchair with their heads hanging, because they are so drugged, and to put it bluntly, that's what I've seen with my own eyes, because if we have so many shortcomings when it comes to staff. Then it can't be handled any differently than by sedating people. It's unfortunately like that, and a sleeping old person is easier to handle than one who wanders the corridors and hides in strange cupboards. Therefore – small, small, small. That's my biggest piece of advice. We can achieve a lot of great things with natural medicine. My mother doesn't get anything anymore except a tiny blood pressure pill, and that's been the case for three years now. I recently had a conversation with the doctor. That too, please be in conversation with the doctor, be in conversation with the nursing staff, get information – super important. My mother has her blood taken regularly, and he says she has great values, she doesn't need anything. And I think that's great.

It is truly sad that the conditions in some nursing homes are not so good. However, I am very happy that you found the best accommodation for your mother and that everything turned out for the best. But when you look back at the time when you were still caring for your mother at home, you also said that it was really challenging. Do you perhaps have some tips for relatives who care for their dementia-stricken relatives at home? Did you have everyday tips, or certain routines that made care easier?

Yes, first of all, it depends, because there are people who come from nursing backgrounds and then effortlessly care for their father or mother. But for someone like me, who suddenly had to shower and wash her mother, I mean, I hadn't seen my mother naked for decades, that's a situation where you think you're not really going to do that.

I did it and I thought - wow, I did that. I really thought I was great because I did it with such unconditional love. By completely changing my perspective towards my mother, she was simply a woman who needed my help, and I did what I had to do. But even there, please get help, a nursing service can do that, they have techniques we can only dream of, we don't have to inflict that on ourselves. There are many people who love doing that and even get paid for it. We get help there, that's not even a question. Then, of course, it was also the case that my apartment or my house was not at all handicapped accessible. It was not easy for my mother, for example, in the shower, it was a huge struggle until I got her in there. This uncertainty with dementia is, of course, also a huge issue. They don't just briefly go up a flight of stairs or overcome hurdles, because their perception also changes. That was also so interesting. For example, when I drove on narrow roads, she was always afraid that we would fall off somewhere to the right and left, meaning everything, everything changes. Above all, nothing is as it used to be, and I think that's another important message. Be patient, nothing is as it used to be, and people can't do things like they used to. Then to say, "Well, you used to be able to do that," that's not appropriate. So get help, and if possible, furnish the apartment reasonably handicapped-accessible or elderly-friendly, and these people don't need much. I mean, in the sense that they don't need a huge variety or anything like that. But what they always liked and did, they like to keep doing. The music they like to listen to, the pictures they paint - my mother used to be an artist. So all these things, being in the garden. Sometimes she went into the garden at 9 a.m. and came back in at 6 p.m. That was, of course, an absolute gift for me when the weather was good. She was tired in the evening, so it was really like a child you sent out to play. She was so content, she was, of course, dirty from head to toe, then came the topic of needing to shower. The topic of cleanliness and hygiene is a huge issue. How often I argued with her about her underwear, because they don't want to give anything up, it should always stay that way. They don't want to change, they don't want to wash, they don't want to undress, then this argument starts again if you allow yourself to say, "Mom, look, but you've been in the garden all day today, you're a bit dirty" and then there was an uproar "me and dirty, I'm not dirty" and then she doesn't get washed anymore. So if it were up to people with dementia, they would always wear the same clothes and never wash themselves and would always have the same bedding and so on. To lovingly accompany that is an art. Because we have to make compromises there, also to say, okay, then we just don't shower today. We do a cat wash. And I stopped arguing with her afterward, so there were also times when I said, "You know what, then just stink," I didn't care then. This discussion was sometimes unbearable.

But then the next day, there's a mother again - at least with me or my mother it was like that - who was very, very gentle and very loving, and where I said "come on Mom, shall we wash you", "yes, come on, yes" she said, I always hoped for that. Tomorrow is a new day. And then we just try again. My comfort was that old people don't emit as much odor anymore, they don't sweat anymore, so you had to get the worst of it done somehow, but not be so pedantic, sometimes let things slide. That's always the most important thing, that the person with dementia is happy, because otherwise everything is too complicated and too exhausting.

Great respect to you and all other relatives who care for their loved ones. It is a great hurdle that one takes on, and you also realize how much you have to work on yourself to understand what is happening, because the sick person is not doing well either, and it also takes a toll on you. You said that you can also be contacted if you need help. Could you perhaps elaborate a bit on what you do, how you help relatives cope with everyday life with their dementia-stricken loved ones?

At that time, I wished I could have just chatted with someone. I wished I could have just called someone and asked, "Say, can I describe some of my mother's behaviors to you? Do you think it could be dementia?" Without making a huge fuss right away, and that's what I offer people. They book a slot with me, a 30-minute phone call, which is, of course, free, and they can talk their worries off their chests, they can ask me what the next step might be, they can tell me anything, they can ask me anything. It's very, very multifaceted; sometimes the questions really revolve around the onset of dementia, but there are also questions that sometimes go into married life, into partnership life, because that affects the whole structure. The whole structure, including perhaps grandchildren, husband, and so on. When we care for our parents, it doesn't just happen on the side. Everything changes! And just being able to talk about it, to be able to take this shortcut without having to get an official appointment somewhere in four weeks, that's what I wished for back then, and that's what I want to make available to people.

How can you best be reached, via your website or social media?

Exactly, just enter Instagram Julia Bernsee or "die Mutter des Vergessens" (the mother of forgetting) and then in my bio there's the link to Calendly, where you book a slot or choose a suitable appointment and then I'll call you. Very simple, completely uncomplicated.

We will of course include the link and hope that many relatives will contact you, whom you can then support and help further. Thank you for the conversation, for the many insights I gained and also for the many tips that can certainly help relatives.

You're very, very welcome, thank you for letting me speak here.

 
The interview can be found on our YouTube channel:

FAQ / Frequently Asked Questions

1. Who is the Gardia emergency call bracelet particularly suitable for?
The Gardia emergency call bracelet is ideal for people with dementia or early memory loss. It provides relatives with the assurance that their loved ones can quickly call for help in an emergency – whether it's for falls, health problems, or when disorientation occurs.

2. How does the emergency call system work for people with dementia?
The bracelet is easy to use: A single press of a button triggers an emergency call. Previously stored contacts are informed, so the person receives immediate support. This is particularly important for people with dementia, as they do not have to express themselves in a complicated way in stressful situations.

3. Can the Gardia emergency call bracelet also detect falls?
Yes, the bracelet has fall detection that automatically recognizes when the wearer has fallen. Relatives are notified immediately. This allows for quick reactions, even if the affected person cannot actively trigger the emergency call themselves.

4. How does the Gardia emergency call bracelet support the daily lives of relatives?
Relatives can rest assured, even if they are not constantly on site. The bracelet provides security for people living alone or being cared for at home. Especially with dementia, it can help to recognize situations such as nocturnal wandering or disorientation in time and to react quickly.

5. Is the Gardia emergency call wristband easy to integrate into everyday life?
Yes, the wristband is comfortable to wear, waterproof, and easy to use. It does not interfere with daily life and adapts well to the needs of people with dementia. Routine and familiarity are maintained, while safety is ensured at all times.