I have a hard time expressing to people why I enjoy working with people with dementia so much (it was even harder when I was in my 20s), but if they haven’t done it, they can’t understand how rewarding it is to learn to see someone’s personality through all the dementia noise.
One of my earliest memories of dementia, if you can say it that way, was when I was maybe 5 years old. (As I was growing up, I spent a lot of time at the local nursing home. Many of my friends were over 60 – these really are my kind of peeps. My grandparents were on the board there and my mom was a nurse there until she switched to hospice nursing.) So, I was at the nursing home one day and one woman was asking for her mother and she asked me to help her. I go up to the nurses station and start asking if they can help us find my friend’s mother. Well, they couldn’t help us. I can’t remember who it was or what explanation they gave me, but I could see they felt really horrible having to explain to me about this woman’s health condition. I also remember there were other times I would sit outside with people waiting for their dad to get them for dinner – my first recollection of Sundowning, along with helping to close the blinds in the day room before dinner.
Many people think it is depressing to work with dementia, and I am hoping to challenge that stigma through my work and let people know that living with dementia, like anything in life, is a journey – an adventure. And much like other things in life, the adventure is richer when we share it with other!
One of my earliest friends, Floyd, would let me hang out in his room and look at (play with) his porcelain cat collection. One day, he gave me two of his porcelain cats from his collection. I was over the moon! These were probably the first two porcelain things I was given, when I think back on it. I remember my mom made me give them back because she thought I had swiped them – to this day, she still gets teary-eyed about Floyd giving me two of his cats. I guess he was pretty ornery with most everyone else.
You don’t know what is around the next corner, you don’t know where it is going or what will happen along the way, what they could say or do next. In a very real way, loved ones and caregivers are along for the ride. And it is the most complex roller-coaster ride you can imagine.
It will certainly not always be pleasant.
But it will not always be unpleasant, either.
There are incredible lows and highs, there is frustration, anger, guilt, deeper love, stronger connections, meaningful experiences, exhaustion, resentment, spiritual revelations, depression, sacrifices to their own health and well-being, and so much more. The experience leaves you forever changed. Once you are a caregiver, you can’t undo that experience or go back to how you were before – not even death removes the depth of the emotions.
But I don’t think it needs to be all sad and loss-related. There are some wonderful experiences you gain by knowing someone with dementia. There are glimpses of genuine self-expression, like if they are excited about their favorite food, they will do a little ice cream dance. These are the little golden nuggets that make me smile at the end of the day, and they help me to know that I am doing my work for the right reasons – because it doesn’t feel like “work” to me.
So, in writing this blog, I am hoping to be able to express different angles of dementia and to highlight some of the, well, highlights.
Just the other day, I was walking with a group in the woods as part of my work with early-onset dementia services. One gentleman was lagging behind, so I was walking with him. And suddenly we saw a deer in the woods, so stopped to watch it. It looked at us and we looked at it for the longest time – as the group got further and further ahead of us. So I waved goodbye to the deer. Well, he thought that was really something! With big smiles, we took turns waving to this deer, who just kept looking at us. What an experience the 3 of us had in those few moments! And that certainly is one of the highlights of my week – I can’t explain why, but it is.
I have been working on starting a business that provides high quality and evidence-driven (useful) services for people with dementia and their caregivers. In particular, I aim to make it easier, safer, and healthier for individuals to age in place (continue to live in their home).
After I finished my PhD, I was contacted to consult a small business in Barcelona, Spain. MobilesDynamics was wanting to add more innovative aspects and services to their dementia care service. They provide an app and online service for caregivers so that they can coordinate and track the care (manage medications, appointments, “shifts” with other family members). One of the innovative aspects we worked on for an EU grant proposal was a way to register and track symptoms, and provide the important information for doctors (need to reevaluate medications) and the useful information to caregivers (care strategies). Long-term use would also reveal information on how effective medications, strategies, and treatments were on particular symptoms. It was a lot of fun working with a large, international consortium on the proposal, and Fred at MobilesDynamics is truly devoted to what his company provides. I am happy to recommend businesses with a genuine passion for this stuff!
After that, I started working on my own business plan. I have a lot of ideas for services (care options) or products (technologies), and am trying to pick a good starter idea to get my feet wet. I sought out the advice and sparring from the local Business Advice Network in Aalborg, and the guy was really excited about my pitch and encouraged me to take out my business license and get going already! Great news!
I submitted a business plan to a local Venture Cup competition. While I am disappointed I didn’t make it on to the next round, I am even more disappointed that I lost out to a glove that supports drinking heavy beers. Yes, it’s true. The Oktoberfest Glove was more successful than my Vacation Village business plan. Along with the business plan and funding, I think I still need to work on the name, though. Any suggestions would be welcome!
And a few weeks later (of actually working on the business plan!), I was contacted regarding a start-up business in Germany called SeniorWise, who is focusing on consulting to other businesses on their website, product, and/or service design in order to make it useful for older adults. The man with the plan (business plan) had helped his grandmothers many times with their various technologies in the home and got the idea to make it easier for businesses to make it easier from a user design point of view. He also has another recent PhD grad on board, who had worked with health technologies in a clinical setting. While they didn’t focus on dementias, they were very interested in being able to accommodate that user group as well. So, we have been underway working on pilot projects, making contacts, applying for grants, and already approaching clients. In fact, we landed our first two this week!!! We haven’t officially founded the business yet, since the EXIST grant we are applying for stipulates that it cannot already be a business. Our first few clients will be gratis, but will give us valuable experience and start to build our reputation. We should find out in the early fall if we will be funded and launching in Berlin!
In June, 2014, I started a research project Aalborg, observing and providing recommendations for the early-onset dementia services in the municipality. This will be my summer job! I have been writing about it and including pictures – click the link above to visit the page if you want to read more. I absolutely enjoy what I am doing! I think that this internship will also give me a lot of inspiration and ideas for my future work in care options and technologies for dementia care. I am also hoping that a paid position could come out of this internship, possibly with the National Dementia Research Center in Copenhagen since my husband and I will be moving there in the fall! June 4, 2014, we celebrated our 9 year anniversary in Aalborg, Denmark, so we are kind of ready to move on to another city already 😉 He was offered a PhD fellowship at Copenhagen University, and I would like to continue to with my work until we launch the start-up in Germany.
In July, 2014, I started another internship in Aalborg at the Center for Welfare Technology. There, I evaluated their current technologies and assistive devices in house as far as how beneficial they would be for people with dementia as well as care professionals and family members. Then, I compiled a list of recommended technologies they could consider having to benefit this same target group. I gotta say, this was also a really fun project! I got to play with technologies, try them out, and then write up if and how they would be meaningful in the lives of people with dementia. And I had great colleagues to work with – it really was a great job.
Shortly after I finished these research internships in Aalborg, the start-up plans for SeniorWise in Berlin fell through. At least for me. It was starting to seem like it just wasn’t going to work out for us to continue to be in a partnership together, which was too bad because we actually liked working together! I think the main deal-breaking issue was that he wanted to be located in Berlin the first 3 years while focusing on a German market, and I would rather focus on a European or global market and be in Berlin the first year only during the incubation period. But, this is how entrepreneurship goes – it is highly improbable that you will launch a successful and profitable business the first time you try and with the first team you try.
After moving to Copenhagen in December, 2014, I started trying to connect with small and medium sized companies working in the area of technologies for dementia care. I got a lot of interest and a lot of meetings, but, unfortunately, there seems to be a serious lack of funding for these types of projects and the small companies just don’t have the finances to hire me as part of their team. You can read a bit more about that in my post What it’s like to be an unemployed dementia specialist 🙂 So, it’s great that I am getting meetings and growing my network. I think Copenhagen is on the cusp of doing big things in this area and I am very excited to see what the future brings.
I was then contacted by my former university (Aalborg University, where I studied for my PhD) to do some project development and grant writing for a smart home-like system that will be used to detect early changes in diabetes and for diabetes management. Unfortunately, after a month of working on that project, they decided that they would not be applying for the grant and the project concluded.
But, I was in luck, because I had another internship lined up with Copenhagen Living Lab! I have had my eye on this company since shortly after we moved to Denmark in 2005. They focus on technologies and solutions to increase quality of life in communities, and have been focusing on older adults and dementia care more in the past few years. I would be working on project development and grant writing again, this time to start a program using personalized music in dementia care, based on the American Music & Memory model. This is the same program that is featured in the awesome (really – awe will be inspired!) documentary film “Alive Inside.” Check out My Review of Alive Inside here. You can read more about My Work with Music & Memory here. We designed a program to train the nursing home staff and the family members and volunteers on how to use the personal music and were able to go out and test this concept in 3 different nursing homes in the Copenhagen area. It was a LOT of fun and great experience for me. Unfortunately….again…. the company is dissolving this summer, so the internship didn’t lead to steady work. I am still talking with one of the co-founders and in touch with the nursing homes, so we are working on how we can still get this up and going in Copenhagen.