printable version

Teaching about Alzheimer’s by
Talking from the Heart

by Kathy Hickman (khickman@alzheimeront.org)
Education Manager, Alzheimer Society of Ontario

Living with Alzheimer’s disease or a related dementia is highly emotional for both the person with dementia as well as their family and friends. From the moment of first fears that something is wrong, to diagnosis, to increasing care needs all the way through the progression of the illness, families experience a myriad of emotions. In educating persons with early stage dementia and those close to them, the Alzheimer Society attempts to address both the sometimes heartbreaking realities of the disease and also to help find hope and joy by looking for ways to maintain a high quality of life.

The Alzheimer Society First Link® program connects people to support, education and other services as soon as they are diagnosed with dementia. A part of this program is a comprehensive Learning Series that is offered in-time, that is, at points in the progression of dementia when the particular content is relevant. Over the past year, we have been redesigning the First Link® Learning Series with a Dialogue Education approach. What we are finding is that by incorporating opportunities for people to talk about their experiences within the learning design, learners feel both honoured and able to express how dementia is impacting them – a great need is being met in an intentional way.

While emotional responses are often right at the surface when teaching and learning about Alzheimer’s disease and related dementias, there are several ways that we have attempted to make space for the expression of these emotions within the First Link® Learning Series. The use of strong graphics, opportunities to reflect on what various aspects of the disease and diagnosis process or being a caregiver have meant, encouragement and support in developing the tools to communicate as a family about difficult topics, all have the ability to reach people on an affective (heart/emotional) level.

One place we attempt to elicit a shift in attitude is to see that though dementia is often very difficult there are many joys that remain. Within the first workshops of the series, called First Steps, which is intended for persons with early stage dementia who have just been diagnosed and their care partners, we tell a story that is powerful in helping to see the diagnosis in a new way. The story tells of Itzhiak Perlman a world renowned musician and how in a concert one of the strings on his violin broke, but that he continued to play, recomposing a new and beautiful melody as he did. The story tells also of how a man living with dementia heard this story and related it to his own experience. He said that although he faced many challenges in his life as a result of his diagnosis of dementia, he still could make “beautiful music”. His life was certainly changing, but he, and others like him, could continue to live meaningful lives. Although the music continues, the melody changes as persons with dementia learn how to adjust to living with the illness. After hearing this powerful story learners in the session are then invited to reflect on and share how they are already doing just this in their own lives (personalize the learning).

For caregivers, we try to help them to find meaning in their care-giving role, by naming both difficult and joyful aspects of their relationships with the person they are caring for and by identifying the strengths and skills that they bring to the caring for someone with dementia.

One of the most profound ways that persons with dementia and their caregivers are able to express and work through emotions about how the disease is impacting them is through the “un-designed” dialogue that happens between tasks. By creating a space where a gamut of emotions are acknowledged and accepted, and by fostering connections between learners, people can feel safe to share their experiences. The most powerful mode of tapping into affective learning domain is hearing and honouring the stories of those who are our best teachers – the people living with early stage dementia and the family and friends who stand with them along the dementia journey.

In summary, from my experience designing and teaching for the Alzheimer’s Society, I have learned to use the following techniques to teach the affective learning domain, so the heart is engaged in learning:

1. use a story to teach content
2. design a learning task so people can personalize the learning
3. help learners find their own meaning
4. make time for “un-designed” dialogue
5. acknowledge and invite emotions connected to the content being learned
6. hear and honour people’s stories

These techniques help learners connect to the new content in an important way – a way that will more likely lead to change.

| More

<<back