Last week The Conversation Project launched an important new Conversation Starter Kit – aimed to help families and loved ones of people with Alzheimer’s disease or other forms of dementia.
Once our flagship resource, the Conversation Starter Kit, became widely used by families and health care professionals (with more than 300,000 downloads), The Conversation Project began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia. We responded eagerly – particularly because we, too have personal experience of caring for family members and loved ones with Alzheimer’s and other forms of dementia. How is “having the conversation” different for these families and loved ones? What challenges do they face, and what help can we offer?
Our approach was simple: We began by talking with – actually, listening to – people whose loved ones had Alzheimer’s or other forms of dementia. Key themes emerged from their stories: “What if my husband doesn’t want to have the conversation – or insists that ‘there’s nothing wrong’ with him?” “What if it will upset my sister to bring up the topic of end-of-life care?” “What if our mother’s illness is so advanced that she isn’t able to express her wishes?” “What if what my father says he wants now is different from what he said when his mind was clearer?” There are no easy answers to these questions – to the extent that there are answers, they lie in the shared stories and experiences of people who have been there.
We also talked with caregivers, social workers, geriatricians, and experts. Personally, I was struck by story after story of family members who felt abandoned by the health care system – precisely when they needed it most. The health care system is well structured to take care of people with serious diseases; if you have cancer, or heart disease, there are systems in place to treat you. But when it comes to cognitive impairment, in most cases the systems are simply not there. And I was struck by the amount of shame that comes with dementia.
The providers we spoke with kept repeating the same message: Alzheimer’s, like other forms of dementia, is a disease – in this case, a disease of the brain – and no more a cause for shame than heart disease or cancer.
Most of all, I was struck by the honesty and openness of those who shared their stories with us. I hope that other families who are in similar situations find this Starter Kit useful in understanding the wishes of their own loved ones. I hope the new Starter Kit helps them see that they are not alone: many others have felt the same things they’re feeling; have had the same worries, and doubts, and fears that they’re having; and have ultimately found a way to understand and respect their loved ones’ wishes.