Week 14: Future Prospects in Dementia Research

Written by Dr. Nathan Herrmann, MD FRCPC

Lewar Chair in Geriatric Psychiatry
Professor, Faculty of Medicine, University of Toronto
Head, Division of Geriatric Psychiatry, Sunnybrook Health Sciences Centre

As mentioned in a previous posting, at the moment, there are only 4 drugs approved in Canada for the treatment of the symptoms of Alzheimer’s disease. These 4 drugs provide modest benefits at best, and do not change the inevitable progression of the illness. While there has been decades of intense research, Alzheimer’s disease still cannot be prevented, its inevitable progression cannot be appreciably slowed or halted, and even its symptoms cannot be dramatically improved. Research continues however, with scientists generally targeting the 3 major pathological components of the illness which are amyloid, tau, and inflammation.

One of the more disappointing failures in the last several years has been the antibody treatments, including the recent results with solanezumab. This did not slow memory and cognitive decline in a large, lengthy study of people with mild Alzheimer’s disease. This type of treatment, aimed at removing amyloid, has also failed in many other studies with similar agents. There are still a couple of other similar antibody therapies and drugs aimed at reducing amyloid that are going into trials this coming year. These include trials of individuals who do not have Alzheimer’s disease diagnosed, but are at high risk for developing the disease based on family history and/or genetic profile.

Another disappointment this past year was the failure of a drug aimed at tau. Given that the majority of treatments that have been researched to date have focused on amyloid, this much newer focus is potentially exciting, and several antibody treatments for tau are in early development. Finally, a number of drug treatments which effect insulin and blood sugar are being examined given an intriguing relationship between insulin, blood sugar and the development of Alzheimer’s Disease.

Dietary supplements have also received attention recently. Medium chain fatty acids or triglycerides have been studied and are currently being examined in several trials. Coconut oil is an excellent source of these fatty acids, and while likely completely safe, its use cannot be widely recommended at present given the lack of definitive research.

Non-drug therapies are also being studied intensively. Unfortunately, while researchers have been studying treatments like exercise and cognitively stimulating activities like computer games, these interventions have not yet demonstrated that they can effectively prevent or delay the onset of Alzheimer’s disease or other dementias. Direct brain stimulation using electricity, magnetism, and even special lights, is being studied as well.

We are involved in a particularly exciting study aimed at preventing Alzheimer’s disease. This study of over 300 people who are at high risk for developing Alzheimer’s disease will follow people for up to 5 years or longer. We have chosen 2 groups of older individuals who are at high risk of developing dementia – those with mild cognitive impairment (but no dementia), and those who have experienced a clinical depression in the past. These individuals attend an 8 week, daily classroom course of “cognitive remediation” with specialized computer games, as well as receive a safe neurostimulation treatment called transcranial direct current stimulation. While we are about halfway through the study, we are continuing to actively recruit subjects for the trial. If you, or someone you know are interested in this study, please call us at 416-583-1350. Perhaps together we will find a cure for this terrible illness!

Week 13: Student Reflections

            Since November 2016, five high school students, along with their teacher from Havergal College in Toronto, Canada have been visiting residents in a dementia care home on a weekly basis. During our weekly interactions, we engage in conversation and brain-stimulating activities with the residents. Through this experience, we have not only had the incredible opportunity to work with people with dementia, but we have also learned a lot about this illness. We have shared the knowledge we learn about dementia through this blog, and this week, we will be sharing our personal reflections of our experiences.

            Most of us did not have much contact with people with dementia prior to our work at the dementia residence, so this experience was completely new to us. Nonetheless, we were motivated and excited to volunteer with senior adults. Before we began, we were asked “What motivates you to volunteer with senior adults?” Here were our responses:

This is a great opportunity to try something new. I have volunteered with children before by assisting in coaching tennis and swimming programs, and I would also like to be able to help senior adults.

            - Clarissa Yu

It's important to give back, and it helps me appreciate my current life. It's also just important and fair and right to be kind to others in general and to those who may feel especially lonely. Also, I love having the mental capability to go about my life, so I'd like to help give people as much of an opportunity to do that as I can.

            - Daniela Krcmar

I am curious about dementia and love connecting with other age groups.

            - Katherine Ross

I like helping people out, no matter what their age is, in order to make a positive difference in their lives.

            - Olivia Nadalini

I know that senior adults are becoming a larger group in our society, as the population ages. As a result, health-related issues, such as dementia, will become more prevalent. Thus, I am motivated to work with elderlies and do whatever I can to help them. Furthermore, having had memorable experiences with my grandfather who suffers from dementia, I want to help make a difference in the lives of others with dementia.

- Selina Chow

It's satisfying to care for people and contribute to enriching their lives.

            - Dr. Erika Friesen

            Although working with people with dementia was a new experience for most of us, we were fortunate to have amazing mentors – Professor Nathan Herrmann at Sunnybrook Health Sciences Centre, University of Toronto and the staff at the dementia care home. Under their guidance, we have learned how to effectively communicate and interact with a person with dementia. As a result, we were well-prepared in advance to engage with the residents at the dementia home. Going into our first weekly visit, we each had several goals that we hoped to meet from this experience. This is how we responded to the question, “What do you hope to gain from this community partnership?”

I hope to develop a deeper understanding of how to help seniors dealing with dementia and to further understand the condition. I also hope to improve my interpersonal skills.

            - Clarissa Yu

I hope to gain more understanding of these mental conditions that affect a lot of the general population and that will affect many of us in the future. I hope to gain more perspective into senior adults and their perspective on life. Also, it's an important chance to develop my character. It's not often that I get to interact with people of older age and it's a wonderful opportunity to do just that.

            - Daniela Krcmar

Learn about dementia and be able to empathize and relate with others.

            - Katherine Ross

Experience and connect with people.

            - Olivia Nadalini

I hope to learn more about dementia and other related issues that senior adults face, so that I can become an ambassador of dementia to my peers. I believe that knowledge is the first step that we can all take to being able to understand others.

            - Selina Chow

See students develop relationships across differences of age and intellectual ability.

            - Dr. Erika Friesen

            Reflecting back on our memorable weekly visits at the dementia care home, it is safe to say that we not only met our initial goals, but exceeded them. We have made strong intergenerational friendships with the residents and have found so much joy in helping others succeed. As well, we have all learned more about ourselves and improved our interpersonal skills through this experience. Our individual reflections are below.

Clarissa Yu:

My experience with going to the dementia care home has been truly insightful. Before going, I had never had the experience of communicating with someone with dementia. I was unsure of what to expect, and did not know how interacting with the residents would be different from everyday conversations. Nevertheless, I was also excited to be given the opportunity to establish a friendly relationship with a resident. After the first few sessions, I learned that one must learn to be flexible when working with a patient with dementia. At times, the residents that I worked with did not want to do a certain activity, and in that case, it was best to find an alternative one that they would enjoy. Other times, some residents were resting or not interested in having a conversation at all, and then it was best to speak with someone else. However, I found that I greatly enjoyed visiting. Even if I did not consistently speak with the same resident each visit, it was delightful to get to know a few. Each one has a different story and some of their past experiences are incredibly interesting. Many residents also have lots of insightful knowledge to offer and possess a great sense of humor! At times, some of the residents expressed feelings of loneliness, and I was happy that I am able to provide companionship and be there for them to talk to when they felt this way. Overall, visiting the residents has been an extremely positive experience for me, and truly provided me with different perspectives.

Daniela Krcmar:

When I was first given the chance to visit a senior in a dementia home with some other students, I had only some idea of what to expect from previous school visits to a senior home. However, this experience was much more fulfilling than I could have imagined. Being partnered up with a lady with mild dementia gave me a lot of insight into this disease. I became aware of the initial symptoms of this disease that my partner experiences, such as short-term memory problems which led to some repetition in conversations. As well, this experience cleared up many misconceptions I had about dementia, and clearly showed me through conversing with my partner and with the other residents that dementia is experienced differently by each person; some struggle with language, some struggle with short-term memory while having excellent long-term memory, and some struggle in other ways. Finally, and most importantly, I gained a friend through this experience. I always look forward to sharing tea with the lady I was paired up with and talking about anything, and I know she enjoys my company just as much. We’d make jokes about each other and through these weekly interactions, I learned that people with dementia are just like those without it. With, in some cases, a little patience, they can make jokes, and make you laugh, and hear your stories, and tell their own stories, and discuss philosophy just like anyone without dementia can. If someone in your life has dementia, be patient, aware, and understanding of their limitations from their condition, but most importantly, be aware and loving of whom they are underneath. It'll be worth it.

Selina Chow:

            When I first met the resident I was paired up with, I didn’t know what to expect. The only other person with dementia whom I have interacted one-on-one with is my grandpa. However, I knew that people with dementia are unique and have different needs from their peers. I found myself a bit nervous before our first visit – thoughts were racing through my head like: would my partner like me?, what if we have nothing to talk about for the whole hour?, what if a situation arises and I don’t know how to deal with it? Fortunately, it turns out that I was worrying for no reason. My partner and I immediately connected, as she is very warm and friendly and we are both quite talkative. I enjoyed my first visit, and I was looking forward to my next visit the following week so much that seven days felt like an entire year. After my first visit, I realized that my partner is just like me – she is always happy and likes to laugh. Although she does repeat herself and often mixes people’s names and details up, I learned that people with dementia are still full of life. I find that the term “dementia” is often associated with negative connotations that make people feel pity for seniors. I soon realized that there are so many false assumptions about people with dementia in society, such as the belief that they can’t do anything due to their failing memory. As I spent more time with my partner, I was determined to be an ambassador for those with dementia, in order to break down the stigma surrounding memory loss. Just because people with dementia may not be able to communicate as clearly as those without it, that doesn’t mean that we shouldn’t hear their stories. Volunteering at the dementia residence has opened my eyes to the bright side of the illness: people with dementia are just like us, with good days and bad days; they can be independent; they have hobbies; they have emotions. Moreover, there’s so much to learn from them. People often assume that relationships with the elderly are only one-sided, as you have to spend so much energy and time taking care of them without gaining anything in return. In reality, people with dementia have a lot more to teach us than you would imagine. For example, my partner enjoys telling me her stories and sharing life lessons with me. She even treats me as a daughter of her own, and often tells the staff at the residence that even though I’m not her daughter, she wishes I was. Our friendship is a special bond, because I learn as much from her as she does from me.   

  

            Overall, our volunteer experience at the dementia care home has been an eye-opening experience for all of us. We sincerely thank Professor Herrmann and the staff at the dementia care home for mentoring us this year.

Clarissa Yu, Daniela Krcmar, Katherine Ross, Olivia Nadalini, Selina Chow, Dr. Erika Friesen

Week 12: How do we communicate with a person with dementia?

Talking to the person with dementia

1. Never argue, instead agree
2. Never reason, instead divert
3. Never shame, instead distract
4. Never lecture, instead reassure
5. Never say “remember”, instead reminisce
6. Never say “I told you”, instead repeat/regroup
7. Never say “You can’t”, instead do what they can
8. Never command/demand, instead ask/model
9. Never condescend, instead encourage
10. Never force, instead reinforce
http://www.dementiacarefoundation.org/ChallengingBehavior.pdf

Week 11: What are the non-medication treatment approaches? - Part II

Last week we began to review some of the non-medication treatments that have been studied to improve behavior, cognition, function and quality of life for people with dementia. We continue this week with more examples.

• Light therapy
Patients may become more restless and confused in dark environments. It is referred to as ‘sundowning’ and may be caused by an upset body clock. Melatonin is a hormone that keeps our sleeping patterns in tune with the 24-hour cycle of day and night. Every day, as the sun goes down, our levels of melatonin increase and we begin to feel less alert. When the sun comes up, our levels of melatonin decrease quickly. Increasing light levels during the day could help to prevent ‘sundowning’ and disrupted sleep for patients. In light therapy, the patient sits in front of a light box that provides about 30 times more light than the average office light, for a set amount of time each day. This has improved effect on restlessness and on disturbed sleep for patients in some studies.

• Aromatherapy
This may reduce agitated behaviors. Lemon balm and lavender oils have been most commonly used. There is a reduction in behavioral problems in people who received arm massage with lemon balm compared with those who received arm massage with an odorless cream. Lavender oil placed in a sachet on each side of the pillow for at least one hour during sleep may reduce agitated behaviors.

• Nonphysical barriers
They have long been used as a non-restraining method of preventing wandering. They include camouflaging exits by painting them to look like bookcases, painting a black square in front of an elevator to make it look like a hole, and placing a thin Velcro strip across doorways.

• Caregiver support
Help family members care for the patient and themselves.
Caregiver interventions have a positive effect on behavioral problems in patients.
It is important to remind caregivers not to take it personally. Disturbing behaviors of patients lack intentionality and are part of the normal progression of the disorder. Caregivers also need to appreciate that hallucinations are normal in these patients and do not necessarily require medications if they do not disturb the patient or place the patient or anyone else at risk.
Do not try to reason with the patient; instead redirect him or her. Offer caregivers suggestions for reassuring or distracting agitated patients rather than trying to reason with them. Encourage caregivers to maintain routines and consistency. Using low calm tone of voice, giving simple instructions, and leaving and then reattempting care that is refused initially can be effective. Give positive rewards for desired behaviors and do not reward negative behaviors.
Recommend that caregivers create a safe environment. Encourage them to use locks, alarms, or ID bracelets as appropriate if patients are prone to wandering.
Active involvement of caregivers in making choices about treatment distinguishes effective from ineffective support programs, decreases the odds of institutionalization, and may lengthen time to institutionalization.