Overview: End-of-life planning is an important conversation to have with loved ones, especially those who may be experiencing cognitive decline and brain diseases that impact cognitive health. The brain is responsible for some of the most important functions of the body, including how well you think and remember, motor functions, emotional functions, and how well you respond to touch. Alzheimer’s disease is one of the leading brain diseases in the U.S. that is irreversible and impacts all aspects of daily living. It is important to start the planning before there’s an issue of whether or not an individual is competent enough to make important decisions regarding their end-of-life plans.
Breanna Reeves
Asking your loved one what kind of burial ceremony they’d like or if they have a last will and testament can seem pretty morbid and even awkward.
While broaching the topic of end-of-life planning may be difficult, it’s an important conversation to have with loved ones, especially those who may be experiencing cognitive decline and brain diseases that impact cognitive health.
The brain is responsible for some of the most important functions of the body including how well you think and remember, motor functions, emotional functions, and how well you respond to touch. Alzheimer’s disease, a form of dementia, is one of the leading brain diseases in the U.S. It is irreversible and impacts all aspects of daily living.
Symptoms of Alzheimer’s disease include “memory loss beyond what is normal with aging,” according to the American Brain Foundation. This memory loss may show up as difficulty remembering new information, or recent events and misplacing items. Other symptoms of Alzheimer’s include trouble concentrating and confusion.
An estimated 6.7 million Americans age 65 and older are living with Alzheimer’s dementia in 2023. Alzheimer’s is the most common cause of dementia, accounting for an estimated 60% to 80% of cases, according to the Alzheimer’s Association.
Other common causes of dementia are Cerebrovascular disease, which happens when brain tissue is damaged; Frontotemporal degeneration (FTD), which occurs when front and side lobes of the brain die; and Parkinson’s disease, a brain disorder that affects the nervous system.
“You want to start the planning before there’s an issue of whether or not an individual is competent,” said Michelle D. Strickland, an attorney based in Colton.
As these brain diseases are all marked by cognitive decline, planning ahead and planning early is essential to financial and end-of-life planning for caregivers and care receivers.
Once a dementia diagnosis is made, it can become increasingly difficult to assess whether or not a care receiver is competent enough to make important decisions regarding their end-of-life plans.
“It’s really never too soon to start thinking about end-of-life plans, and also putting those plans into place,” said Susan Howland, who is the senior director of programs for the Southland Chapter of the Alzheimer’s Association.
“When you’re talking specifically about Alzheimer’s disease, these plans should begin while the person still has the capacity to make those legal and financial decisions, which is typically in those earlier stages of the disease.”
The first step to end-of-life planning begins with a conversation
The first step with addressing end-of-life planning is starting early and having the conversation with trusted family members, according to Strickland.
“It’s a hard subject, because people do not want to talk about dying. They do not want to talk about the possibility that they may have to have someone make decisions for them,” Strickland said.
It’s important to gather those who should be involved in end-of-life planning such as family members who are trusted to make decisions on behalf of someone suffering from cognitive decline. Include family and friends who are responsible and trusted enough to carry out plans.
“I think it’s very important for people to know that their wishes will be carried out after they’re gone,” Strickland explained.
This process includes having necessary documents such as a last will and testament, and even advance healthcare directives that explicitly state what steps loved ones should take. These directives allow loved ones to know what medical decisions they should follow in the event of their loved one’s death. An advance healthcare directive is a legal document that provides instructions for medical care and only takes effect when a person can no longer communicate their own wishes.
Learn what documents you’ll need for planning
As part of the planning process, Howland explained it is important to keep track of other key documents in addition to wills and health directives such as assets like bank accounts, real estate and vehicles. Keeping track of financial documentation like recent income tax returns, life insurance policies, health insurance policies and power of attorney documents will help with the process.
A power of attorney legally allows someone else to make financial, medical and property decisions on behalf of someone else. Strickland appointed her son, who is her only child, as her power of attorney, allowing him to carry out her wishes if she is ever incapable of doing so.
“It really also helps family members to understand that person’s wishes, if those are the family members that are actually going to execute those wishes further down the line,” Howland said. “Also, these trusted individuals should have copies of the completed legal and financial documents in order to execute those wishes later.”
If a power of attorney isn’t appointed, a loved one will have to go to court to get authority over financial affairs, if necessary. With no power of attorney, in the event of a medical emergency, there is no one to tend to a loved one’s financial responsibilities like paying monthly bills.
Unless someone is a beneficiary on their loved one’s bank account, they don’t have access to their finances. To Strickland’s surprise, a lot of people do add beneficiaries on their bank accounts. Beneficiaries can be listed for life insurance policies, college savings accounts, 401(k) plans and individual retirement accounts (IRA).
“So in getting a power of attorney, you’re protecting yourself with regard to transactions for your life after death,” Strickland emphasized.
Some individuals may also consider a living trust, another estate planning tool, that allows someone to decide how they want their assets to be managed and distributed by appointing a trustee, both while they’re alive and after they pass. Different types of assets that can be put into a trust include property, stocks, antiques and bank accounts.
Start your planning early and take it step-by-step
Howland recognized that discussing end-of-life planning with a parent or grandparent, or any loved ones can be a challenging, but necessary process.
“It’s completely an overwhelming process, and sometimes it’s really hard to start,” Howland said. “Also, I want to acknowledge that it’s sometimes an uncomfortable topic. Sometimes our children almost feel invasive, asking about their parents’ legal and financial situations.”
With these things in mind, setting time aside to begin this process by gathering everyone involved is a good first step. Taking the process step-by-step is also important so as not to get overwhelmed.
Gathering information for end-of-life planning can begin with collecting logins and passwords, and maintaining them in a single place as part of organizing information related to digital assets such as online banking and brokerage accounts, and retail apps.
“Everything doesn’t need to be tackled and accomplished at one sitting. And you can always enlist the help of professionals and resource organizations like the Alzheimer’s Association to support and provide some guidance,” Howland shared.
The Alzheimer’s Association has a free online Legal and Financial Worksheet that is organized by categories like assets, income, expenses and legal documents. This worksheet allows individuals to add necessary information across each category, or even to begin thinking about what information they will need.
Additionally, the Alzheimer’s Association has a 24/7 helpline — 800-272-3900 — that offers no cost, confidential listening and referrals to resources in the community in over 200 languages. Other resources are available from the Coalition for Compassionate Care of California (CCCC) who works to educate and change systems on “high-quality care” for those who are near the end of their life or who are seriously ill.