There comes a changing of the guard with each generation. The roles of parent and child can become reversed as elders’ abilities diminish, sometimes leaving their spouse or offspring in the awkward position of becoming decision makers for them. The advice of loved ones can come as a relief — or might spawn resentment as an older relative perceives helpfulness as an unwelcome intrusion.
Lynn James, a Penn State Extension educator for food, family and health based in Gettysburg, recently presented a webinar provided in partnership with the Alzheimer’s Association of Pennsylvania. The session provided pointers for easing necessary discussions between elders and their loved ones about unpleasant topics related to declining life skills in general and Alzheimer’s disease specifically.
Since Alzheimer’s disease is feared by many seniors, it’s not surprising that conversations about it are usually reluctant ones. Most often initiated by the younger generation, such discussions are approached with trepidation, not wanting to cause hurt feelings, nor spark hostility. The temptation is to avoid the needed conversation or postpone it as long as possible.
The Alzheimer’s Association says the right time to have these interactions is simple — the sooner the better. Jointly making decisions about such matters in advance of a crisis can create a comfort level for both the elder and the younger participants.
Among the most universally concerning topics are determining when it’s time for an older person to stop driving and when it’s time to bring in help for household tasks. Another important area of concern is how to get faltering seniors to a doctor to obtain a diagnosis. James pointed out that the doctor’s visit is of particular concern because symptoms that seem like Alzheimer’s indicators might actually be signs of other possible health conditions that need attention.
Setting the Tone for a Successful Conversation About Alzheimer's Disease
Successful Alzheimer’s disease conversations start with a plan for using finesse and kindness and should preferably be rehearsed first with another family member. Make notes about examples to share with the elder person, such as specific incidents of forgetfulness, repeating themselves, getting lost in familiar places, deteriorating personal hygiene or unsafe behaviors.
The discussion might start by asking the older loved one if they would want to know if you’ve noticed any changes in their behavior. If yes, the way has been paved. If not, focus on your own concerns. In either event, using specific “I statements,” such as, “I’ve noticed that you seem to drive much closer to the edge of the road lately,” are less threatening than using negative accusations like “You just don’t drive as well as you used to.”
The Alzheimer’s Association encourages finding a comfortable time and location when neither party is feeling rushed, sitting close to each other and using empathy for what the elder is likely to be feeling. A tone of kindness is key.
If the elder is resistant to seeing a physician, discuss how they’ve been feeling. Oftentimes that individual may have noticed changes in themselves. Remind them there are numerous causes for declining abilities such as dehydration, medications, depression or urinary tract infections. Be candid and honest, but caring, during this conversation.
The Alzheimer’s Association provides helpful tips for successful discussions about seeking a doctor’s opinion. It’s best to avoid mentioning “dementia” or “Alzheimer’s disease,” which is one form of dementia. Instead, focus on things the elder is having increased trouble accomplishing.
A little-known Medicare feature is the free Annual Wellness Visit with a physician. This check-up includes physical, mental, emotional and cognition evaluations. A loved one should accompany the elder and bring along a list of concerns to discuss with the doctor. The HIPPA Act prevents doctors from discussing the results of this evaluation with others without the patient’s written permission, so have them sign a release form in advance. As further inducement to see a doctor, the Alzheimer’s Association suggests pairing the doctor appointment with an enjoyable outing, such as shopping or having lunch together.
A person with Alzheimer’s disease may become incapable of making decisions, so using a “therapeutic fib” might become necessary to get them to a doctor’s office. An example is telling an elder their doctor’s visit is an insurance company requirement in order to renew prescriptions.
Approaching Difficult Topics with Compassion
The first difficult conversation with an elder is likely to be about whether they should continue to drive. Resistance is to be expected, since this is viewed as key to their independence. The right time to have this discussion is before an accident occurs. Watch for how the elder handles their vehicle at intersections or when in traffic on a multi-lane highway with cars on either side. Having difficulty navigating in previously familiar territory is another warning sign.
The Alzheimer’s Association recommends having a conversation about this matter with the elder while their driving skills are still competent. A good discussion starter is noting, “We all need to stop driving at some point. How would you like us to handle it when that time comes?” It is suggested their preferences should be written down for future reference and, ideally, even signed by both the elder and their loved one.
Appeal to the elder’s sense of responsibility about possibly creating a danger to others if they continue driving when it’s no longer safe for them to do so. Be prepared to reassure them who will be available to provide them with transportation when they can no longer drive. This will reassure them they’ll still be able to get out of the house for appointments, errands, church, hobbies and social occasions.
If all else fails, it might become necessary to have the elder’s doctor write a prescription saying they can no longer drive. Here again, empathy is important; put yourself in the elder’s position and understand how this might seem punitive and understand their sense of helplessness.
Discussing finances with elders can be another sensitive subject when faculties start to fade, which is good reason to plan ahead while the person is still fully aware. Acknowledge this is scary and difficult to discuss. Tell them, “I’ll be here for you. We’re going to do this together and here are the tools I need to do this.” Find out who their doctors are, which bank they use and where important documents are located. Involve financial advisers and other family members so everyone is on the same page. Consider asking to be given a power of attorney to conduct their affairs, as well as a durable power of attorney for healthcare.
As Alzheimer’s disease progresses, realize a care team will be necessary, because no single caregiver can do it alone. Bring together yourself, the elder, other family members, the primary care physician and a neurologist, if appropriate. Decide who will coordinate care and see if your peers or the elder’s peers are available to assist. Check with your workplace to see if you have benefits like family leave which could apply. And of course, don’t forget community resources like Pennsylvania’s county Area Agencies on Aging.
The Alzheimer’s Association is also an important partner. It offers a toll-free helpline available 24/7 at 1-800-272-3900. Information is also available on-line at alz.org.