Successfully navigating the legal, medical, and ethical challenges posed by dementia was a central theme of a recent conference hosted by Somerville-Cambridge Elder Services (SCES).
The program featured a panel discussion of local experts, who offered perspectives on common dementia ethical issues. In organizing the discussion, SCES Clinical Director Annie Fowler said the goal was providing guidance for common—but often difficult – dilemmas.
“There are a lot of challenges that come with dementia, so we wanted a program that would empower people by providing education and concrete steps they could take,” said Fowler.
The panel discussion featured attorney Neal Winston, psychiatrist Rebecca Warner, and Home Care Aide Council executive director Lisa Gurgone. The following is drawn from their responses to six common dementia ethical issues posed by the discussion moderator:
What factors do you consider when an individual shows increased signs of dementia and a family member wants to get the individual to sign a Health Care Proxy?
A Health Care Proxy gives another person permission to make health care decisions, and Winston said the key questions are if they trust the potential proxy and if they’d feel comfortable with them making decisions about their care.
Warner said her goal in that scenario is preserving the person’s autonomy, while also balancing safety and comfort. She indicated it’s best to have those discussions before severe dementia sets in, to get a clear idea of what the person wants.
A person with memory loss often doesn’t recognize they can no longer manage certain tasks. What are the options if they decline assistance and have not been medically determined to lack capacity?
Gurgone said Home Care workers are often in a position to see things that cause concern, adding it’s important to work closely with case managers and medical providers to address problems.
Warner advised working with the individual to find mutually agreeable supports, saying solutions should be non-confrontational and voluntary, when possible. She also advised contacting Adult Protective Services if the person is in danger.
Clients with mild to moderate dementia often can maintain routines and don’t qualify for Home Care. But they may be at risk for wandering or unsafe driving. How best to assist those clients?
Home Care staff are mandated reporters, which means they’re required to report safety concerns to Adult Protective Services. Gurgone cautioned that Protective Services discussions often involve balancing public safety with the person’s right to make their own decisions; but she also advised filing follow-up reports, if the first one doesn’t resolve the issue.
An ID bracelet or GPS device were also suggested as measures to mitigate wandering concerns.
A client with moderate dementia is still driving and has had some minor accidents. What is the best way to intervene?
The RMV has a Medical Recommendations Department that investigates reports of unsafe driving, and can require vision tests and other evaluations to maintain licensure. However, Winston cautioned that such reports are subject to disclosure to the reported driver if requested.
Another alternative is DriveWise, a national testing model that provides an independent and objective assessment of the driver’s abilities, along with a recommendation on whether they should continue driving.
A caregiver who is Health Care Proxy and Power of Attorney is making medical or financial decisions that professionals involved disagree with and think may put the client at risk. What options do they have?
Disagreements between family members are a common source of friction, but Warner said medical providers are still responsible for providing their own clinical judgement when faced with directives they think are unsafe, inappropriate, or not in a patient’s best interests. She advised reporting to Adult Protective Services, if a health care agent or Power of Attorney is making poor decisions on an individual’s behalf.
Power of Attorney allows another person to make financial decisions, and Winston said most common conflicts involve potential misuse of assets, saying those sometimes wind up in the courts. He listed a trusted relative and careful vetting of the situation as key components of entering those arrangements.
What are the ethical issues of using antipsychotics and benzodiazepines to treat symptoms of dementia?
Warner lamented that better medications for dementia are not available, citing risks with both types of prescriptions. With antipsychotic medicine, she said that’s typically a discussion with the family about quality of life for the patient, noting death is a possible side effect.
With benzodiazepines—such as Valium, Ativan and Zanax – Warner said a common problem is trying to reduce usage by patients who’ve taken those medications for much of their adult lives. Longtime users often want to increase their dosage to reduce anxiety, but that exacerbates symptoms such as fall risk and memory loss.
“You’re going in the wrong direction if you’re doing that,” she said. “You need to talk about tapering off instead, but that’s usually not popular with the patient, because they’re used to it.”
The SCES dementia conference was funded through an Executive Office of Elder Affairs grant.
Lisa Gurgone is Executive Director of Home Care Aide Council, a non-profit trade association that develops and maintains standards of best practices for home care aide services. Rebecca Warner is a geriatric psychiatrist, who works with SCES Adult Protective Services. Neal Winston is a principal at Winston Law Group, which specializes in a variety of elder law issues.