The other Alzheimer’s tragedy

Ethelle Lord cared for her husband, Larry Potter, at home for the first 10 years that he suffered from Alzheimer's disease.

She quit her job, modified their home to make it safe and cut back on expenses, including groceries and gasoline. Ms. Lord did what was necessary to ensure that they had enough money to meet his needs before the long-term-care coverage for which he was eligible as a veteran kicked in.

“Those years cost an arm and a leg,” she said. “With Alzheimer's, the first few stages are very bad, and the health system wants the families to take care of them.”

Thanks to careful financial decisions and estate planning, Ms. Lord made it through those years without going bankrupt.

But more than 15 million other Americans provide about $210 billion in unpaid care a year

to patients with Alzheimer's or other forms of dementia, and every 68 seconds another American develops the disease, according to the Alzheimer's Association.

Caregivers' physical and emotional health often suffers, too, creating more financial difficulty.

More than 60% of caregivers rate their emotional stress as high or very high, and a third report symptoms of depression, the association reports.

Alzheimer's and dementia caregivers had $8.7 billion in added health care costs last year.

Although all the advance planning in the world doesn't make it any easier emotionally to watch Alzheimer's steal the mind of a family member, it can be easier to cope if preparations are made early, said James Karabas, a financial adviser with Vestor Capital Partners LLC, which manages about $600 million in client assets.

One of his clients has a 95-year-old mother who no longer recognizes her. This client and her siblings, who are all in their 70s, secured all the necessary legal documents early in the disease's progression so that they could make financial and medical decisions for their mother after she became unable to do so for herself, Mr. Karabas said.

He helped to consolidate their mother's accounts to make oversight easier.

DIFFERENT STAGES

In addition, Mr. Karabas made sure that the children had the documentation about their mother's investments, which included several condominiums and several accounts from which funds would be needed to pay for her care.

One of the challenges of Alz-heimer's is that because there are many different stages that can last long periods — or just briefly — it is hard to know how long it will be before the person is incapacitated, he said.

It is really unlike any other disease, Mr. Karabas said.

“If you are given a terminal cancer diagnosis of six months to live, you know you generally have that amount of time to get things in order. With Alzheimer's, it slowly creeps up on you,” Mr. Karabas said.

“You can live 20 years with Alzheimer's,” Ms. Lord said from her home in Mapleton, Maine. “Long-term-care coverage only applies when you actually need hospital or nursing-home services.”

When Mr. Karabas learns that a client has a family history of Alzheimer's, he will suggest buying LTC insurance, which has to be in place long before a diagnosis.

Anyone with a pre-existing condition won't be able to get an LTC policy, he said.

Ms. Lord, 65, a former paralegal, knew the importance of getting her husband to sign all the necessary legal documents before his condition worsened.

In fact, she went a step further. Rather than arranging a typical power of attorney, she secured guardianship rights so that she can speak for him in the courts. Such authority was important in this case because he was still embroiled in litigation with an ex-wife.

Property ownership is another consideration, Ms. Lord said.

The Lords' home was placed solely in her name so it couldn't be considered as a source of payment for future bills from her husband's care.

“We reviewed all the documentation early on, before he lost his mind too much,” Ms. Lord said.

She now drives five hours every few weeks to visit her husband at the LTC facility to which she moved him about two years ago, when he could no longer walk. Ms. Lord visits with her husband, 70, for a week at a time.

“The bottom line is, people have to get their affairs in order because a lot of things will happen unexpectedly,” Mr. Karabas said. “That's why we plan for the unexpected.”

lskinner@investmentnews Twitter: @skinnerliz