Dr. Patricia (Tia) Powell’s grandmother had dementia and she remembers vividly watching her mother care for her. Once, when her grandmother was in the later stages of the disease, her mother brought her grandmother out onto the porch, which was difficult because her grandmother had trouble with mobility. Her mother put her grandmother in an easy chair and put her feet up and tucked in, around her grandmother’s legs, an afghan that her grandmother herself had crocheted, many, many years before, when she’d still been able to crochet.
After all the effort, Dr. Powell’s mother looked at her grandmother and said, “Mother, how is that?”- incredibly proud of her work at trying to make her mother comfortable. Dr. Powell’s grandmother had been mute for many months before that, as commonly happens at the end of dementia. But you could see that she was struggling to say something. She struggled and struggled and with great might pulled out a single word. She looked at Dr. Powell’s mother and said, “lousy.”
It hurt Dr. Powell’s mother’s feelings. But for Dr. Powell, hearing that, she thought to herself, “it was really lousy for her grandmother. Dementia’s lousy. Cancer’s lousy. Serious illness is lousy. But isn’t there something more we can do here? Is there a way we could think about this? Is there a way you could help that mother and that daughter find a dementia that’s maybe a little bit less lousy?”
A Different Approach to Dementia Care
While watching her mother care for her grandmother as her grandmother declined, and later caring for her own mother with dementia, bioethicist, psychiatrist, and medical school professor, Dr. Tia Powell began imagining a different way to approach the disease. Her book, “Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End,” looks at her approach on what compassionate care for people with dementia could ideally be and how she’d like to live if she’s given a diagnosis of dementia, as others in her family have.
Bioethics Concerns Related to Dementia Care
In interviews with NPR and Next Avenue, Dr. Powell mentions that she sees a couple of different problems when it comes to bioethics in dementia. For instance, if you go to a doctor’s office and you’re given the diagnosis of dementia, things should be done differently. According to Dr. Powell, “(i)n a lot of very good hospitals — academic medical centers with research and medical schools — the standard of care is: I do some tests; I figure out, yep, you meet criteria for dementia; I offer to enroll you in a study because we don’t have any effective treatments for dementia and then I say goodbye. And people walk out, and they feel like they’ve been hit across the head with a two-by-four. So, I think, ethically, OK, we don’t have a cure, we don’t have what we think of as a medical treatment to offer. But these people are in our care. The standard should be, let’s think about what plans you need to make. I’m going to refer you to a social worker, and that needs to be a covered service for your insurance. Do you need to just have some support groups that you go to, to think this through? Maybe you need to think about your housing. Is it good for aging-in-place, for being vulnerable? Are you the financial decision maker in your family, and now you have dementia? And are you aware that financial thinking ability is one of the first things to go in dementia? So how can we help you protect your finances, make some plans?”
She also believes that dementia patients should not just be preparing for bad things. Questions that should be asked include, “(w)hat good things can we advise you about? What do you love to do that you can still keep doing? How can we help you with quality of life?”
Dr. Powell knows that we can’t retrain every neurologist to take that approach, and that right now, that’s not the standard of care. But she believes that doctors should “plug patients into a new world of things that you’re going to need some help with.” According to Dr. Powell, “doctors don’t have to do that work, but should be aware that these are the ways that we actually can help people.”
Final Stage Dementia Patients Do Have a Voice — It’s Written in the Advance Directive
According to Dr. Powell, during the end stage of dementia, the person is likely to be completely bedridden, may not be able to swallow, is unlikely to be able to speak, probably doesn’t recognize the people that they love, can’t walk, can’t do lots of things, and is likely incontinent. That being the final phase, she believes that the important thing is to be comfortable.
“You do have a voice.” Dr. Powell says, “I can make an advance directive saying…when I’m at that final stage, absolutely, please give me comfort care. It’s not no care. … It is very aggressively do everything you can to make sure that my end is comfortable.”
You can read more about Dr. Tia Powell and her views on bioethics and dementia here.
Do You Have a Loved One with Dementia?
At the Farr Law Firm, dignity and quality of life are of utmost importance to us. Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We already do a lot of what Dr. Powell recommends doctors should be doing. We prepare our comprehensive and proprietary 4-Needs Advance Medical Directive® that contains detailed instructions when you are near death, and for after death, along with our proprietary Long-term Care Directive® to help our clients get the best possible care when they can no longer speak for themselves. We also help protect your loved ones’ hard-earned assets in order to maintain their comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who is suffering from Alzheimer’s or any other type of dementia, please call us as soon as possible to make an appointment for an initial consultation.
Elder Care Fairfax: 703-691-1888
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About Evan H Farr, CELA, CAP
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