Living well…right to the end

Living well…right to the end

May 7 – 13, 2017 is National Hospice Palliative Care Week. Mary Schulz, Director of Education at the Alzheimer Society of Canada discusses some of the misconceptions about palliative care and why it’s important to have conversations about end-of-life.

Mary Schulz

Mary Schulz, Director of Education, Alzheimer Society of Canada

What comes to mind when you hear the words ‘palliative care?’

If you’re like most people, you probably think the person is going to die soon and there isn’t anything that can be done. Or, you may think the person’s care team has given up.

Misconceptions abound.

So what is palliative care? It’s about providing the best possible quality of life for people facing life-threatening illnesses like dementia, right up to and through their final days.

Dementia and its many forms, including Alzheimer’s disease, have a terminal phase. The person will eventually die of related complications or another condition they may have.

Regardless of when death occurs, palliative care focuses on comfort – not cure. Good palliative care helps manage the person’s pain and other symptoms, as well as treatable conditions such as pneumonia. Spiritual and social support is also critical – not only to ensure the person’s quality of life, but also to provide emotional support to their family after death occurs.

According to the Canadian Hospice Palliative Care Association, 74% of Canadians have thought about end-of-life, yet we don’t easily talk about death and dementia. Palliative care opens the door for these conversations and raises awareness about care options that can help people with dementia live comfortably and contentedly as their disease progresses.

When we talk about providing palliative care to someone with dementia, it’s important to discuss their goals of care. These will differ for each of us, and palliative care should address these. For me, I may want to listen to my favourite music when I’m feeling agitated. For you, it may mean looking at family photos. This is what we call person-centred care – knowing each person as a unique individual helps the person with dementia live with dignity.

Palliative care is about health-care teams working together and never giving up on the person, always treating them as a whole person, and thinking about their comfort.

We all want and deserve good palliative care – and people with dementia are no different.

Learn more about palliative care from our four-piece series on dementia and end-of-life care.

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