Perhaps mom is becoming more forgetful and having trouble communicating. Maybe dad is despondent and unusually flustered when driving these days.
It’s not always the case, but memory loss, confusion, and changes in personality and behavior commonly precede a dementia diagnosis. The mere possibility is upsetting. It’s the elephant in the room that can be ignored for only so long.
“I think it’s fair to say that no one ever wants to have a conversation with a loved one about dementia or end-of-life care,” said Regina Bodnar, executive director of
Carroll Hospice, an affiliate of
Carroll Hospital, a LifeBridge Health center.
Having to approach a loved one about dementia when the warning signs are there is difficult, but necessary. You don’t want to wait too long to do it and risk a crisis that could have a ripple effect. But you must be tactful when breaking the ice; this is a time when your loved one needs your most sincere, gentle show of compassion and support.
Three very important topics need to be addressed: doctor visits, driving responsibilities, and legal and financial planning. But before you begin the initial conversation, consider these tips for making it more cordial and effective:
Practice makes perfect
Note the changes you see in your loved one’s demeanor. Your observations will be helpful in determining an approach to the dementia talk.
Once you know what you want to say, rehearse your delivery. Conversations about dementia “take a lot of patience as well as practice,” Susan Dwyer, education coordinator of the Alzheimer’s Association’s Greater Maryland Chapter, said during a recent community presentation on dementia hosted by the Alzheimer’s Association and Carroll Hospice. Try to put yourself and the other person at ease. Avoid being judgmental or verbally abusive. “You don’t want to be harsh, because you can’t really win,” Dwyer said.
The importance of seeing a doctor
Understandably, many adults, young and old, are apprehensive about seeing a doctor. “Some people have a fear of what the doctor is going to say,” Dwyer said. But without scheduling a doctor’s visit, Dwyer says, “you’re not going to be able to take a step in any direction. You’re going to be at an impasse.”
In addition to using a congenial tone and comforting words, it might help if you accompany that person on the doctor’s visit and include an enjoyable activity, like grabbing lunch at the person’s favorite restaurant, in the outing, Dwyer says.
There are other reasons why you shouldn’t let older adults visit the doctor on their own. The appointment presents an opportunity for you and other family members to express concerns to the doctor directly. There would also be someone readily available to help explain concerning symptoms if the patient, for whatever reason, misleads the doctor. “That person might say, ‘Everything is fine. I don’t know why my daughter told me to come see you,’” Dwyer said.
If all else fails, try what medical experts call a “therapeutic fib,” a technique for avoiding anxiety and agitation in someone with dementia. Use an excuse like, “The doctor needs to see you before your prescriptions can be renewed.” This technique is not intended to deceive your loved one, but to help her or him reach an agreeable, safe state.
Not all doctor visits result in a poor prognosis. It may turn out that person’s symptoms, however suggestive of dementia, are actually from another condition, such as depression, normal pressure hydrocephalus, a urinary tract infection, or a thyroid problem. “To be afraid to go to the doctor is really a shame if the condition is actually something that’s treatable,” Dwyer said.
Driving safety
Helping someone with dementia determine when to stop driving is “perhaps one of the most difficult decisions for families,” Dwyer says. Because being behind the wheel demands alertness and quick reactions and decision-making, it is imperative to regularly evaluate the driving abilities of a dementia patient.
“A person in the early stages of the disease may be fine to drive. But it is as the disease progresses that their driving skills need to be re-evaluated. I think that is what makes this a very difficult issue. It is not as simple as a person has the diagnosis, so we can just take away the driver’s license,” Dwyer said.
The driving conversation is particularly difficult because the person has to come to terms with becoming less independent. Put yourself in that person’s shoes—how would you feel if you were faced with the possibility of forfeiting your driving privileges?
Start this conversation by calmly expressing concern about changes you’ve noticed, like scratches on the side of the car, apparent confusion or forgetfulness while driving, or the person’s failure to obey traffic signs or drive at an appropriate speed. Appeal to the person’s sense of responsibility and point out that this is about their safety as well as that of other drivers.
Offer alternative plans for transportation. Perhaps you can transition driving responsibilities to other relatives or friends, or arrange for special transportation services via a taxi or bus. Reinforce medical directives and involve a third party if necessary. “The MVA and some private consultants can also do a driving evaluation, so families don't have to be alone in making the driving determination,” Dwyer said.
As a last resort, the Alzheimer’s Association says, take away the person’s car keys, disable the car or remove the car completely, but not before making alternative transportation arrangements.
No matter what, continue to have empathy and patience, because it could be the first of several conversations about driving.
Making legal and financial plans
Important legal and financial matters must be resolved for people with dementia: a will, a living trust, the designation of a proxy for health care and finances. As it progresses, dementia diminishes one’s ability to make rational decisions, which is why it’s important to plan early.
When having this conversation, Dwyer says, let your loved one know that you’re equally committed to this process and that you want to ensure that their wishes are honored. Explain that these are standard plans everyone needs to make as they get older. Gather the necessary legal documents (advanced health care directives, durable power of attorney for health care, do not resuscitate (DNR) orders, etc.) and involve others (i.e., relatives, an elder law attorney, a geriatric care manager) when needed.
Consider having separate conversations on these matters. “It doesn’t have to be all or nothing at one sitting. There are many steps along the way,” Bodnar said.
LifeBridge Health can help
A non-profit organization, Carroll Hospice provides quality, compassionate care—including medical and nursing services, counseling, and spiritual and bereavement support—to terminally ill patients and their families in Carroll County and surrounding areas.
Levindale Hebrew Geriatric Center and Hospital, across from
Sinai Hospital, also provides excellent health and quality-of-life programs for the elderly, dementia care and rehabilitation programs being among the many services offered at the state-of-the-art facility. Dementia also is among the many conditions treated at
The Sandra and Malcolm Berman Brain & Spine Institute.
For more information about Levindale, call 410-601-2400. Carroll Hospice can be reached at 410-871-8000. Learn more about scheduling an appointment at the Brain & Spine Institute by visiting its
appointment page.
To schedule an appointment with one of our highly trained physicians and find out why LifeBridge Health is Baltimore's premier health care organization, fill out our
online appointment request form, or call 410-601-WELL.