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.

Week 10: What are the non-medication treatment approaches? - Part I

Medication is not the only treatment option

Non-medication therapies may be considered first or at least concurrently with medication. Make sure medical conditions that contribute to behavioral disturbances, including pain, infection, and side effects of medication are treated. Unmet needs, such as thirst, hunger, or desire for attention, must be addressed. Also, avoid disturbing environmental factors, including strong smells, loud noises, and poorly lit condition. Most non-medication therapies have been studied in a series of smaller studies compared to the much larger randomized controlled trials of medications. Here are some examples of the non-medication treatments that have been studied.

• Stimulation/activities including massage/touch therapy.
Improvement in nutritional intake and hand massage, when combined with positive encouragement during a meal, may produce a short-term positive effect on agitation.

• Music therapy.
Listening to music selected by a patient’s family based on patient preference, classical music, pleasant sounds such as ocean waves, and even comforting prayer and stories recorded by family members may be effective for agitation.

• Exercise
This benefits patients of all ages and stages of illness, even those with terminal disease. There is a positive effect of physical activities on behaviors ranging from wandering to aggression and agitation. Activities include indoor exercises, group gentle stretches, and a volunteer-led walking program that encouraged hand holding and singing.

• Pet therapy
In addition to stimulating a social response, patients may benefit from the presence of therapy animals because of:
Reduced agitation. Agitation behaviors may be reduced in the presence of a dog.
Physical activity. Depending on a patient’s mobility, he or she may be able to groom the animal, or even go for a short walk.
Improved eating. Patients have been shown to eat more following a dog’s visit.
Pleasure. Patients may simply enjoy the presence of the dog and its companion, as well as the tricks therapy dogs can do.

• Reminiscence therapy or Life-review
This involves stimulating memories of the past by looking at personal photos/newspaper clippings and discussing the past. It is usually well received by patients and caregivers.

• Cognitive stimulation
This consists of activities such as reviewing current events, drawing, associating words, discussion of hobbies, and planning daily activities. This type of therapy has been shown to improve cognition in patients, as well as well-being and quality of life.

Week 9: What are the common medications used to treat dementia?

Written by Dr. Herrmann, MD FRCPC

Lewar Chair in Geriatric Psychiatry

Professor, Faculty of Medicine, University of Toronto

Head, Division of Geriatric Psychiatry, Sunnybrook Health Sciences Centre

 

Medications for Dementia

As mentioned previously, there are no drugs or treatments that can prevent or cure dementia. At the present time there are only 4 drugs approved in Canada to treat Alzheimer’s disease, and they only provide modest benefit for the symptoms of the illness.

 

Three of the drugs (donepezil, galantamine, rivastigmine) work the same way, and act to increase the amount of a brain chemical called acetylcholine. This chemical or “neurotransmitter” is dramatically reduced in the brains of patients with Alzheimer’s disease and some other dementias including Dementia with Lewy Bodies. These drugs can occasionally improve concentration, memory and other brain functions for short periods of times, though ultimately the disease progresses even with ongoing treatment. They all have similar side-effects which can include upset stomach, nausea, diarrhea, loss of appetite and slowing of the heart rate. A trial of one of these medications is generally recommended for all patients diagnosed with Alzheimer’s disease. 

 

The fourth drug, memantine, works on a different brain chemical called glutamate, which is also effected in Alzheimer’s disease. This drug, used with or without one of the medications above, is generally more helpful in the more advanced stages of the illness. It is well tolerated with few side-effects.

Because up to 90% of patients with Alzheimer’s disease will have some type of emotional or behavioral symptom at some point in their illness, many of these people will require treatment with other drugs. Symptoms such as depression, anxiety, agitation, aggression, hallucinations, and insomnia are all common and are frequently treated with medications like antidepressants, antipsychotics and sleeping pills. There is increasing concern that these medications have limited benefits and can potentially cause significant and serious side-effects.

 

Clearly, there is a desperate need for better treatments and ultimately medications that can prevent the illness before it begins to cause symptoms. There is active research ongoing in these areas.

 

For more information on the medications to treat dementia, please refer to Dr. Herrmann’s Memory Doctor Blog at http://health.sunnybrook.ca/memory-doctor/alzheimers-disease-drugs-effective/

 

Week 8: Can we prevent cognitive decline?

 

Treatment of dementia depends on its cause. In the case of most progressive dementias, including Alzheimer's disease, there is no cure and no treatment yet that meaningfully slows or stops its progression. Some of the most active areas of research in risk reduction and prevention include cardiovascular factors, mentally stimulating activities, physical fitness, and diet.

Cardiovascular risk factors:

The brain is nourished by one of body's richest networks of blood vessels. Anything that damages blood vessels anywhere in the body can damage blood vessels in the brain, depriving brain cells of vital nourishment and oxygen. Blood vessel changes in the brain are directly linked to vascular dementia, but they often are present along with changes caused by other types of dementia, including Alzheimer's disease and dementia with Lewy bodies. These changes may interact to cause faster decline or make impairments more severe. So do not smoke, keep blood pressure, cholesterol and blood sugar within recommended limits, and maintain a healthy weight.

Mentally stimulating activities:

Participating in active, mentally stimulating activities may delay onset and slow progression of dementia. Some examples of mentally stimulating activities include:

1. Sing songs. Play music.

2. Do arts and crafts, such as painting or knitting.

3. Organize household items, clean the house, particularly if the person used to take pleasure in such tasks.

4. Engage in discussions, attend lectures, socialize with friends and family.

5. Regular trips outside the home; e.g. visit a botanical garden.

6. Read the newspaper or magazines.

7. Look at books the person used to enjoy.

8. Cook or bake simple recipes together.

9. Work on puzzles. 

10. Avoid watching too much TV – that is a passive type of activity.

Physical exercise:

Regular physical exercise may help lower the risk of some types of dementia. Evidence suggests exercise may directly benefit brain cells by increasing blood and oxygen flow to the brain among many other potential benefits. Exercise should include both cardiovascular (walking, running, swimming) and resistance (light weights, yoga) type activities.

Diet:

Our diet may have a great impact on brain health in the same way it effects heart health. The best current evidence suggests that heart-healthy eating patterns, such as the Mediterranean diet, also may help protect the brain. A Mediterranean diet includes relatively little red meat and emphasizes whole grains, fruits and vegetables, fish and shellfish, and nuts, olive oil and other healthy fats.

 

Week 7: How do we treat dementia?

1) Ensure proper diagnosis of dementia

There is no single one test to diagnose if someone has dementia. The diagnoses of Alzheimer's and other types of dementia are based on a careful medical history, a physical examination, cognitive testing, laboratory tests, the characteristic changes in thinking, function and behavior associated with each type of dementia and the possible use of brain scans (CT scan and MRI). To determine that a person has dementia with a high level of certainty is easier but it is harder to determine the exact type or cause of dementia because the symptoms and brain changes of different dementias can overlap. Sometimes the family doctor may need to refer the patient to the specialists like neurologists, psychiatrists or geriatric medical specialists.

2) Assess safety

The behavior of the patient with dementia needs to be closely monitored, especially to make sure patient does not pose harm to self or others.  Family members and general practitioner need to pay attention in the areas of wandering, neglect, abuse and driving.

3) Assess and treat co-morbid medical illness

Patients with dementia still require regular checkups and health assessments like other patients. Many common illnesses can make the dementia worse.

4) Caregiver education and support

To look after a family member with dementia can be demanding and exhausting. It is important the caregiver understands the disease. Education and support for the caregivers are vital.

5) Community resource

Alzheimer’s Society will be a good resource to patients, caregivers and health care providers. Day programs, home supports, respite care, long term care can be all appropriate treatment options depending on the stage of disease.

6)    Behavioural problems

Behavioural problems like agitation, aggression, depression and anxiety can be challenging and may require the help of a specialist.

7) Cognitive decline

Treat (prevent?) cognitive decline---please refer to the following week.