How to Plan Ahead After a Loved One's Dementia Diagnosis

An older couple look over paperwork together while at the kitchen table.

(Image credit: Getty Images)

published 28 August 2024

Ben Franklin once famously quipped we shouldn’t put off until tomorrow that which we can do today.

Sage advice in general but particularly true for families with aging loved ones, or families who are or will be facing a dementia diagnosis.

Dementia’s medical horizon shows some promising developments, yet worldwide, new cases still occur every three seconds. In the U.S., those suffering from Alzheimer’s (maybe the most well-known of the various dementia forms) is estimated to grow from almost 7 million today to 13 million by 2050. This form of dementia is the fifth leading cause of death for those over 65, and according to the Alzheimer’s Association, it impacts women at twice the rate it affects men.

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While many considerations arise following a loved one’s dementia diagnosis, the immediate emotional and medical care worries quickly evolve into one question: What needs to be done? The emotional stress of finding suitable care can be daunting by itself. And the cost of such care can cripple the best-laid financial plans. Dementia slowly robs us of time, memories and our capacity to do many things, like driving or caring for oneself. Planning well ahead of its worst ravages can help ease frustrations for the afflicted patient and can also lighten burdens for those providing care.

For those dealing with a recent diagnosis of onset dementia or those who want to ensure you and your family are prepared if that day does come, there are a number of financial, medical and safety considerations to address. Keep reading for tips on where to start and what to consider.

Financial considerations

For a dementia patient, financial worries can be widespread — from how day-to-day bills get paid to where cash flow will come from or how to budget for the unpredictability of long-term care costs. For starters, it is important to ensure that a financial point-person is in place to provide for these tasks. Typically, that is accomplished by having a durable power of attorney (DPOA) in place that will appoint an agent (typically called an attorney-in-fact) who can step in to manage the patient’s financial affairs.

If the patient has a revocable trust or living trust as part of their estate planning, it is a good idea to ensure this financial agent and the trust’s trustees are either the same or can work together to provide seamless care and attention to these matters.

Oftentimes, a DPOA is drafted as what is called a springing power, meaning the agent’s authority to act on behalf of the person establishing the authority “springs into effect” only once the person is no longer capable of acting on their own. With dementia patients, there are occasions where it may be appropriate for the financial agent to have that power effective immediately (to avoid having to prove incapacity every time the agent wishes to act on the patient’s behalf).

Before the disease progresses too far, it is helpful to go through the patient’s current finances with them. Each of the following steps can lighten the burden on the one who will care for the patient’s finances.

Work on getting all financial papers in one easily accessible place (e.g., bank and investment records, estate planning documents, outstanding loans and other recurring bills, insurance policies, real estate titles, etc.).
If the patient has a long-term care insurance policy, knowing the terms of that policy and having access to the policy documents will become important.
For financial care being provided from a distance, using a secure online “vault” that allows storage and access can ease day-to-day matters. These online storage options are often available through your bank or financial adviser.
As these issues are being explored, it can be helpful to put in place auto-pay for recurring expenses (e.g., utilities, loan payments, caregivers’ expenses, etc.).
Similarly, ensuring the financial care provider has access to online accounts (like banking and investment accounts) can allow them to ensure accuracy and to stay informed on account balances.

As these preparatory steps are taken, it’s also a good time for the patient and the patient’s lawyer to review estate planning, which should include reviewing asset titling. Opportunities to make changes will stop when the patient has lost the capacity to execute new documents. Ensuring the estate plan represents the patient’s wishes, asset titling and beneficiary designations are well prepared, and the appropriate people are in place to carry out those plans will be enormously comforting for the patient.

Likewise, reviewing tax considerations with the patient’s accountant can prove valuable. As expenses rise, having a plan for what assets should be drawn upon first, where unrealized capital gains may exist, how taxes are to be paid and related matters will all ease the stress that comes with drawing down asset balances. If the patient may have to relocate to be closer to family members, make sure to consider with his or her tax advisers what tax implications may come with a change in domicile.

Medical considerations

As the patient visits with an estate planning attorney to ensure plans are well-prepared and current, at the same time, the attorney can make sure a current living will and/or health care directive is in place.

These documents will express the patient’s intentions for end-of-life care and appoint an attorney-in-fact to act for the person in making medical decisions when they can no longer do so. Often, within families, the people who are appointed to make medical decisions are those who know and respect the patient’s wishes and who are involved in managing their physical/medical care.

Communication between the patient, attorney-in-fact, caregiver, family, medical team and financial advisers is essential.

Having candid conversations with the patient to ensure wishes are known can be comforting to the patient and helpful to the care provider.
These conversations are also a good time to make lists of all the medications currently being taken and which doctors are involved (e.g., primary care providers and specialists).
Opening dialogue with doctors early (by joining in a visit to the doctor’s office or developing a telephone rapport) will make communicating with the patient’s medical team easier when the caregiver’s time comes to carry that responsibility.
Early discussions with the patient can jumpstart considerations for that day when in-home care or a memory facility is needed.

Anticipatory tours of care facilities and interviews with at-home care providers, while extremely difficult for all involved, create some peace in knowing the patient had a voice in the decisions. Doing so early highlights some of the future long-term financial implications and can also make clear how Medicare or Medicaid could play a part in financing these matters.

Safety and security at home

When addressing the all-important financial and medical considerations of dementia care, safety and security at home must also be a top priority. As an aging loved one begins to decline, especially those with dementia, taking steps to provide for their safety and security is critical. Patients still living at home, particularly those living alone, must go through a comprehensive risk assessment. An at-home care manager or team should provide a personalized assessment that should, in general, include:

Taking steps to reduce tripping or fall risks, such as removing rugs, thick carpets or objects blocking walkways, if necessary, and installing rails in showers, bathrooms or on steps
Mitigating risks associated with forgetting to turn off a device, like stoves, space heaters and fireplaces
Confirming that smoke alarms and fall detectors are in working order

It could also be beneficial to use necklaces or bracelets that will notify a public emergency resource if the individual has fallen. Some caregivers have even used in-home security cameras to monitor the loved one’s well-being.

Similarly, getting organized early for day-to-day care will also pay big dividends for the patient and caregivers.

Place prescription medicines, daily food portions and similar daily need items in agreed places and monitor them to ensure proper usage. Pill-minders become a necessity if the caregiver isn’t on-site to provide medication directly.
Establish a list of service providers for both home and self care (e.g., hair dresser, pool maintenance, lawn care, handyperson, etc.).
Arrange pet care where necessary, considering veterinary appointments, grooming and pet sitting.
Organize the patient’s clothing in a way that they have easy access to it without having to make decisions.

Speaking of easy access, technology has transformed how we stay in contact, which is especially beneficial for those monitoring an aging loved one who lives alone.

If the patient has a smartphone, is it programmed so family members or caregivers can track their location? Being able to see where they are when they can’t be reached or don’t answer a call can be a tremendous stress relief or a good first step in getting them emergency attention.
If the patient is still driving, program their phone or car to ensure they know how to get directions home or to a family member’s house if they become confused.

Though it is the purpose of all this planning, the sad day will come when the patient can no longer drive or safely handle financial requests, among other things.

Be sure to have a known, secure place for car keys, checkbooks and financial papers and a process by which all financial matters will be handled.
When appropriate, it is always helpful to have a trusted neighbor who is aware of developments and able to check in on your loved one.

Dementia is a horrible disease and one the medical community continues to strive for better outcomes. But until that day comes, for a loved one who suffers from this slow, difficult decline, taking some of these steps ahead of the disease’s worst days can prove incredibly helpful.

In these three general categories of preparedness — financial, medical, safety/security — there are scores of meaningful resources to help further educate yourself as you prepare for dementia’s worsening declines or for a time when you will be needed to care for the needs of those you love. Speak with your financial advisers and medical team early to ensure you are getting the help you need.

Disclaimer

This article was written by and presents the views of our contributing adviser, not the Kiplinger editorial staff. You can check adviser records with the SEC or with FINRA.

Douglas A. Rothermich, J.D., is Partner and Wealth Strategist at Fidelis Capital, an advisor-owned wealth management firm dedicated to addressing the complex investment and planning needs of ultra-high-net-worth (UHNW) clients and institutions. He uses his decades of experience addressing the most intricate needs of generational wealth to develop comprehensive plans for clients’ estate, retirement, asset accumulation and long-term planning goals, all of which are fully integrated with the firm’s uniquely customized investment solutions.