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I talk to a lot of people about dementia; that’s a natural consequence of my work. A substantial minority of those people say that if they were diagnosed with dementia, they'd consider suicide. Since people are thinking about this, I think we better talk about it.
Some may plan to seek out physician aid in dying if they develop dementia. Unfortunately, that doesn't work today in the US and is unlikely to work anytime soon. Why? Those US states with laws that permit physician aid in dying all use the same model statute, one that includes a balance of rights and protections. Physicians may only assist those with full cognitive capacity and an estimated 6 months or less to live. With dementia, if you have decisional capacity, you have longer than 6 months to live. If you have less than 6 months left, you will be in the final phases and won't have decisional capacity. These laws effectively rule out any attempt to secure legal physician aid in dying for a person with dementia. Since this is the only legislative approach that has passed in the US, other states trying to pass laws in support of physician aid in dying are unlikely to vary from the successful model. In short, physician aid in dying is unlikely to emerge in the US as an option for those with dementia.
Others plan to do themselves in without a doctor's help, and some will succeed. There are obvious flaws with this strategy. The sooner you act, the more good time you will lose. The longer you wait, the more you are likely to fail due to cognitive impairment. But my reservations about suicide and dementia run deeper than observations about strategy. I really hate the idea that people feel they have no other good option. Years ago, people felt the same way about cancer, or AIDS, for that matter. Such terrible diseases, no cure in sight. Why stay around only to suffer? We have come a long way toward reassuring those with cancer and AIDS that there is reason to hope, that there is treatment - -though not necessarily a cure -- and that one can live a rich and satisfying life even with these illnesses. I'd like the same to be true for those with dementia.
I grant that we do not have a cure for dementia. Worse still, I don't expect us to have a cure in time for the baby boomers. There is care, though, and care that can support a life worth living. Too few people have access to that care, and we have not done sufficient work to create research, policy, and payment mechanisms that can bring good care, with a wide range of options, to all those who need it. But part of the reason we haven't made sufficient progress in creating and providing care is this business of panic, of jumping off some sort of psychological ledge as soon as we think about dementia. If we don't think there's any chance of getting help, we are unlikely to seek and find it.
I'd like to change the way we think about dementia. Many people, when asked about dementia, picture someone at the very end stage: bed-bound, incontinent, mute, in pain, a burden to family. This may be accurate of some at the very end, and we need to do more to make sure death with dementia is pain free. But that end-stage image is a false picture of the overwhelming majority of people with dementia. A better and more accurate picture would be that of the older man who nodded to you yesterday at the grocery store, or the person next to you at religious services, or at the family birthday party. Most people with dementia are in the early stages, and are living at home, in your community. Our thoughts about dementia would be far more useful if we focused on this person, still up and about, and worked on how to help him or her enjoy a safe and happy life. What would you want? How can you help create the kind of care that permits a balance between safety and freedom? To take one example, I often hear people mention incontinence as the ultimate humiliation related to dementia. But that's an engineering problem, not a moral failing. Why don't we have better adult diapers: smaller, more reliable, easier to use, less baby-like? It's a huge market and only growing. We could work on that.
Good and smart people are in fact working on lots of aspects of dementia, trying to tackle them one by one and then collectively, to see how we can improve life with dementia. There are millions with dementia, and millions more of us will develop this illness. It's time to see how we can make every day with dementia as good a day as possible.
