“Having dementia is an adventure, not a disease”

I came across these inspiring articles about living with dementia. You can also find the original articles by clicking on the headlines.

The message is clear: they still have the capacity to enjoy life and want to be involved in their community. So let’s encourage and support them by making sure people with dementia have a good social network and live in the right environment. This is key to their health and wellbeing.

The Momentia movement helps people with dementia contribute to society, and lessens the stigma that can accompany diagnosis

On a recent trip to London, I met policymakers and care industry leaders to discuss a new approach to supporting older people. Prior to my visit, the health secretary, Jeremy Hunt, made an announcement that caught my attention: he unveiled a package of care to help support those living with dementia, and their families.

Among the initiatives, Hunt said NHS England would invest £90m to improve diagnosis waiting times, a world dementia envoy would be appointed, and British businesses would train staff to become dementia friends.

The investment in early diagnosis is a step forward as it may help us to better understand the cluster of conditions we refer to as dementia. And an initiative such as “dementia friends” is a good way of helping people to understand and support those living with dementia.

But I have two issues with the announcement. It still treats the individual as a victim, and it doesn’t help people remain valuable members of their community. Early diagnosis is one thing, but what is in place to help people with dementia enjoy rich and joyful lives?

The top priority must be to change the frame of reference so dementia isn’t seen negatively, and people aren’t subject to terrible stigma as soon as they’re diagnosed. People with the condition have told me how they are often sidelined and treated as second-class citizens because of their diagnosis. We need to adopt a more pro-age approach to how society recognises older people.

We’re starting to see this happen in the US. There is a grassroots movement in Seattle called Momentia, in which people living with dementia accept cognitive impairment as a part of who they are, and continue to make a valid contribution to society.

The Momentia movement is turning a diagnosis that causes fear and anxiety into something different, where people live fully in the moment. It places the emphasis back on how the person can continue having a fulfilled life, rather than suffering while waiting to die.

The movement is gathering pace. A group of people in an early-stage memory loss programme at the Greenwood Senior Centre designed a campaign to challenge the stigma attached to dementia, by sharing their own stories and perspectives. They developed a flyer called Faces of Memory Loss with their photos and statements like: “Having Alzheimer’s is an adventure, not a disease.”

The message is clear: they still have the capacity to enjoy life and want to be involved in their community. So let’s encourage and support them by making sure people with dementia have a good social network and live in the right environment. This is key to their health and wellbeing.

Innovative models like the Green House Project in the US and, in time, Evermore in the UK, are helping people with dementia to stay active and connected. Both Green House and Evermore provide a real home, not an institutionalised hospital substitute, where the focus is on helping elders to develop deep and meaningful relationships with each other and the people who support them.

Instead of life governed by the staff, it is governed by the residents and they are very much involved in the household. They are not passive recipients of care, but participate in the decision-making that affects their daily life, from choosing what they want to eat to deciding what activities they are involved in. They are encouraged to continue doing what they love.

Research has proven that this approach works. Studies have found that people with dementia living in these environments have preserved function, have less aggressiveness, anxiety and depression, and a lower use of medication.

I truly believe that early diagnosis will only truly be a positive and helpful thing once we have changed societal attitudes to dementia, and have the right models in place to support the millions of people living with this condition.

Dr Bill Thomas is the creator of the Green House Project and developed the Senior ER model of care. He is now working to transform the acute care services provided to elders.

* * * * *

Changing Aging (a great blog that is challenging and changing views of aging, if you are interested) had also published a post on this movement. The author of this post has an interesting job – she’s helping to develop the Seattle Parks and Recreation’s new programs on “Dementia-Friendly Recreation.” Their goal is to provide meaningful recreational opportunities for people with dementia and their caregivers. I wish her the best of luck and will be watching to see how the program goes!

“Having Alzheimer’s Is An Adventure, Not a Disease”

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