Planning for the Future after a Diagnosis of Dementia
So much of the focus on aging well is on the medical aspects— physical symptoms, testing and treatments—that we often overlook other practical factors.
Some forgetfulness can be a normal part of aging, and it’s often not mentioned during doctors’ visits until the memory loss reaches alarming levels.
Initially, the doctor may be full of reassurance, which will help with everyone’s anxiety—temporarily, anyway. Doctors are under pressure not to make referrals to specialists unless they are sure it adds value to the quality of care. And because there is no cure for dementia, their approach is often: let’s not make it more stressful for the patient and their family, since there’s little that can be done medically. This approach does not recognize that a lot can be done legally, emotionally, psychologically and financially, to prepare for what lies ahead. A lot can go wrong both for the patient and their loved ones, during the months and years before the dementia is recognized and acknowledged.
The need for thoughtful planning
Even if someone with mild cognitive impairment passes a screening test, it doesn’t mean they can take their medicine as prescribed, safely drive a car or know if the leftovers in the refrigerator are still edible. It’s also not unusual for someone with cognitive impairment to make foolish or irrational financial moves—opening credit card accounts, signing contracts (for a second mortgage or unsecured loans, for example) without fully understanding terms, or falling prey to scam artists or pushy or unethical salespeople. It’s sad when your banker suspects dementia before your doctor does.
Getting an early diagnosis is essential. It allows you to control the things you can control even though you may be powerless to change the progression of the disease. It gives you and your loved ones the time to consider decisions in a deliberate, thoughtful way, avoiding common mistakes before a patient’s problem-solving skills deteriorate and irrevocable actions are taken.
Why an early diagnosis of dementia is so important
Having an early diagnosis allows a person to:
Designate a health care proxy. This person will make medical decisions on behalf of the person with dementia (PWD), based on clear instructions made while the PWD is still of sound mind. He or she can, for example, decide where they prefer to receive care, whether or not to be treated with chemotherapy for cancer, or go on dialysis.
Designate a durable power of attorney. This person can fulfill the PWD’s legal wishes when they’re unable to communicate or are incapable of rational decision-making. The ability to sign a contract on the PWD’s behalf, whether it’s for setting up companion services at home, arranging care for a pet, or selling a car, gives everyone peace of mind.
Determine living arrangements. Family members may think that a person with dementia should be in a particular setting, whether at home, in assisted living, nursing home or somewhere else. This isn’t necessarily the case. Knowing what a person’s preferences are, what they value and what is most important to them makes it easier to confront hard choices.
Set up spending controls. Before the dementia progresses, it’s important to have a plan for handing control of assets to a trusted person, whether, friend, family member or professional financial advisor or estate planner. It’s better to anticipate that there may come a time that a PWD will need others to manage their money than to wait until there is a financial mishap and try to repair the damage after the fact.
Also know that these arrangements aren’t about solely about the patient.
- If a PWD is your health care proxy, you need to designate someone else to be your proxy—sooner rather than later.
- You many need to assume a role you’ve never had in your relationship before. Many couples split the day-to-day tasks of managing their family, whether it’s keeping track of birthdays, maintaining the social calendar, paying bills, planning meals or fixing things around the house. A PWD’s ability to fulfill customary roles will change, and it’s crucial to rethink those roles and figure out a way for these necessary tasks to get done.
- Rethink the timing of celebrations and vacations. Having a 47th anniversary party instead of waiting for your 50th, taking your cruise to Alaska this year instead of next year, or deciding to put the next generation in charge of planning holiday celebrations are all reasonable things to do if a loved one has just been diagnosed with dementia.
- Plan for the little things, too. It’s not unusual for the person with early dementia, while they still can, make special plans beyond estate planning and healthcare. We know of one gentleman, when told he had early dementia, contacted his local florist and arranged for weekly flower delivery to his wife, continuing a tradition that began after they got married 55 years earlier. This loving act helped sustain her through the long years of caregiving that followed.
- Recognize that dementia not only erases personal memories, but also the location of bank accounts, retirement funds, tax records and many other important financial documents. Find out where these items are, whether the will is updated, and the locations of account passwords and safe deposit box keys.
- Make arrangements for bill paying, grocery shopping, cleaning, repairs and yard work.
These kinds of proactive moves can be difficult, even painful, to face. But waiting to confront these issues can cause a lot more pain down the road. It’s best for to begin the contingency planning early.
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About the Author:
Malka Young, LICSW, CCM
Director, Allies in Aging JFS Elder Care Solutions