Br John-Richard Pagan’s Post

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Retired/Disabled and Living with Dementia

Kate Lee, CEO of Alzheimer's Society, thank you for trying to respond to this very sensitive and raw subject. As someone living with dementia and someone caring for others who are going through neurocognitive changes, I understand that your advert, “The Long Goodbye” might be trying to accomplish. I know that the narrative and experience of the caregiver/care partner for years has been of continual pain and loss. Forever grieving the person their loved one was in comparison to what they have become. However, you could also have shown the new narrative, you might have shown what happens when we remove the stigma and fear from the topic of dementia and how that DOES change the outcome for both the care partner and the person living life with a dementia diagnosis. Yes… there are people who still experience this diagnosis as instant death. And some of them resent me when I suggest there is another way to treat this. But, you and your organization have a responsibility to educate those who do not know of a way that may just help them to cherish their lives for as long as they are living. No one knows their expiration date. Not you. Not me. But, people with dementia hopefully stop putting things off to experience “someday” and learn to live fully in the moment. We could all learn from that. I am sharing your letter for those who might want to read it. https://lnkd.in/ePjHPSW3

Sally Ferris

CEO Together Dementia Support

5mo

I think it would have been better to refer to multiple losses rather than deaths. The person must be seen as having full personhood, supported by others, to the end of their life. I also think the campaign could have been more political. Despite the many losses of ability, the experience wouldn’t be so miserable if support services were better and society more inclusive of people living with dementia.

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