Living Well With Dementia: Lessons I Learned from my Mom
Seven years ago, I sat across from my mom in a neurologist’s office as he told her she had dementia and there was no treatment. We should have been grateful, given data suggesting that just 45% of people with dementia have doctors who bother to tell them their diagnosis. Dementia calls into existence the perfect storm of ageism, nihilism, and our medical industry’s ongoing refusal to think meaningfully about what a good life looks like when life is near its end.
There are so many things I wish someone had told me when my mom was first diagnosed. Most would have made me feel a lot less hopeful. That’s because dementia is a uniquely awful diagnosis that goes much deeper than mere memory loss. It robs us of much of who we are.
In my professional life, I write about medicine and the law. This has included a significant background writing for neurologists, senior living communities, and other businesses providing support to people living with dementia. I’m always astonished by how unwilling these businesses are to be honest about the realities of dementia, even though their clients are living them every day. I’ve long thought that they’d get more web traffic and business if they spoke to caregivers about things as they actually are, rather than in rosy terms about how dementia doesn’t have to change the way you live (spoiler alert: it does).
On some level, we as a society know this. Perhaps that’s why we are uncomfortable talking about the horrible reality of dementia—the incontinence, the aggression, the hallucinations, the terrifying end. But if we want better lives for people with dementia, we must talk about dementia’s realities. It might be easier to accept a dementia diagnosis when doctors give a needlessly sunny outlook, but it makes it no easier to live with one.
So what might improve the actual lives of real people with dementia? Here are the most important lessons I learned from supporting my mom.
The concept of brain failure
Dementia is brain failure. Once you understand this, everything else makes sense. As the brain fails, so too do the systems it operates. This means that just about every weird behavior your loved one exhibits can be a symptom of dementia. From food cravings and hallucinations to pacing and fear of dressing, a vast range of symptoms are common—but medical providers tend to focus only on memory loss.
The right to autonomy
Like the rest of us, people with dementia have feelings. But because their thoughts are distorted, their caregivers tend to forget that their feelings matter. A person living with dementia is going to find stressful situations, well, stressful. This especially includes anything that is painful or unpleasant to which they do not consent. Things like:
-Being restrained in a hospital or healthcare setting to prevent wandering or force treatment.
-Being subjected to painful or scary medical treatments to which they did not consent.
-Any disruption to their routine, especially if it means being in an unfamiliar or scary setting, such as the hospital.
-Being denied the food they like.
They can’t tell themselves, “Well, I have dementia so this stressful thing is important.” All they know is that something terrifying is happening.
Preserving bodily autonomy is critical. With a terminal illness, there is no benefit to invasive medical testing procedures for other terminal illnesses. And the benefits of hospitalization must be weighed against the trauma of restraint and loss of control. In almost all situations, it is better to have a shorter, happier life in which your loved one does not feel terror.
People with dementia deserve bodily autonomy just like the rest of us.
Giving up on a cure
Dementia is a terminal, progressive illness for which there is no cure.
Most treatments either do not work, or make such a negligible difference that most people would not notice a change. The supposedly revolutionary new dementia treatments have garnered significant criticism for not working well, or at all, and one much-hyped new treatment can cause catastrophic and painful side effects.
These are painful, awful realities. But anticipating a cure and not getting one, believing treatment will work when it will not, and spending thousands on scam treatments are all much worse.
When you understand that your loved one will not survive and will not get better, it clarifies their needs. Rather than wasting time fighting with doctors or arguing with your loved one about medication, you can commit to enjoying every moment.
Dementia will kill your loved one. But they’re not dead today. Make today matter.
A focus on quality of life
Many of us spend much of our lives trying to get or remain healthy, even if it means sacrificing some pleasures in the present moment. With dementia, there’s no reason to do this. Eating better will not cure the disease. Brain activities will not make your loved one live longer. There is zero reason to do things they hate in the interest of long-term health, because long-term health with dementia is not currently possible.
What will bring your loved one the most joy today?
What will minimize their suffering?
Do that. Forget about the rest. Today is all that matters when you have dementia.
Avoiding the hospital
For most folks living with dementia, the hospital is a terrifying nightmare. They can’t move around. They’re away from familiar faces and settings. They may be literally tied down, or chemically sedated. The hospital is only for short-term emergencies. It is not a long-term solution, and when it is, you need to weigh the risks of hospitalization against any purported benefits of treatment.
The good death
Death is scary. Maybe that’s why most of us never think about how we want to die. We don’t want to die, and we convince ourselves if we don’t think about it, it won’t happen.
Your loved one with dementia is, just like the rest of us, going to die. What do they want that death to be like? Most people say they don’t want to die in the hospital. If they go to the hospital every time they are sick, though, death in a hospital becomes very likely. Most people don’t want their kids fighting over assets after their death. If they don’t devise a very specific will, though, this fighting may happen.
Help your loved one think through their death while they are still lucid. Rather than projecting your values onto them, work with them to discern what they want death to look like, how they want to be memorialized, how they want their possessions distributed. Everyone deserves a legacy. Give your loved one the legacy that feels right to them.