Making a Plan for Alzheimer's
There are many facets of retirement planning. Most people think of this process as detailing a plan to save for retirement and a plan to supplement one’s income during retirement. However, the planning process should also entail putting a plan in place today that deals with possible future uncertainties that could push the plan off course. Some of the most disruptive retirement risks are related to health care and the risks associated with assisted living as we age. One of the biggest risks families face as parents grow older is Alzheimer’s Disease.
Alzheimer’s affects more than five million people in the United States with the majority of those being retirees with 80 percent being age 75 or older.[1] Another relatively unknown fact it that roughly two thirds of those over age 65 with Alzheimer’s are women.3 As the disease progresses, the symptoms and challenges intensify. The Alzheimer’s Association explained:4
“As Alzheimer's advances through the brain it leads to increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time, and place; unfounded suspicions about family, friends, and professional caregivers; more serious memory loss and behavior changes; and difficulty speaking, swallowing, and walking.”
Coping with this disease is often a painful journey. Not only for patients but also their families and caregivers. If you, or someone you love, has been diagnosed with this disease, it is important that you act quickly to develop an action plan that encompasses financial, legal, and end-of-life wishes.
An Alzheimer’s diagnosis often creates a sense of anxiety and stress among family members that can lead to hard feelings or family feuds. Family may not know their roles as caregivers. If the job of care falls on the shoulders of one family member, he or she may harbor feelings of resentment. Let’s face it: caregiving is a difficult job and most family members are not trained to handle the assignment.
Creating a plan can help restore a sense of control and cohesion among family members and help protect loved ones from potential uncertainty and conflict in the future. A good place to begin the planning process is by learning more about the disease.
Empower yourself.
Alzheimer’s can quickly put a family into a reactive mode as the diagnosis and symptoms can catch us off guard. However, educating yourself and putting a plan in place can help those impacted by this disease get into a more proactive mode which can help to create a sense of family unity and empowerment. Educate yourself about dementia and Alzheimer’s. I’ve been told that joining a support group is helpful as well. Keep a journal. Discuss these steps with loved ones and work to create open and honest communication with family members whenever possible. Understanding what may be ahead can help re-establish a sense of order and control.5
Begin building a care team.
An Alzheimer’s team may include family members, close friends, neighbors, doctors, professional caregivers, members of community organizations, support groups and others.
Our experience has been that communication solves a lot of problems. When you build your care team it is important to have discussions with team members about what may be needed and when to expect that need to arise. Your care team must also understand that being thrust into the role of primary care-giver can be extremely stressful for the person in that role. For many the stress of caregiving can become difficult to manage as the caregiver deals with internal conflicts and emotions such as having a life to live and things she wants to do while also having the responsibility to care for their loved one. The primary caregiver’s sacrifice needs to be discussed and understood by all involved. Further, it must be understood that the primary caregiver will need breaks and that feelings of guilt can accompany this need. This is where support groups can help.
Set Expectations.
It is also important for the family/team to understand what to expect. In the early stages people with Alzheimer’s may need assistance with the following items:6
· Keeping appointments
· Managing money
· Paying bills
· Taking medications
· Planning and organizing
· Shopping and preparing meals
· Exercising and relaxing
· Bathing and using the restroom
In later stages, they’ll need experienced, well trained and patient caregivers. If family members want to provide care, the AARP’sDementia Friends Initiative can offer some insights about how to best interact with and support people who have dementia.7
When possible, it is important to involve the individual with Alzheimer’s while they have the clarity to make sound decisions.
Discuss care options and costs.
Let’s face it: caring for your loved one is a costly affair. While the costs vary by state, below we have quoted the average costs for care as reported by Genworth in 2019:8
A newer option may be a dementia village. These villages, first established in the Netherlands, rely on reminiscence therapy – using past activities and experiences to encourage positive memories and help people with dementia feel calmer.3
Review your financial plans.
Once you have familiarized yourself with care options, take time to review your financial plans. Check in with your insurance provider to ascertain exactly what costs will be paid by insurance and what costs will be paid out of pocket.
As you begin to understand the potential costs of care it is important to have dialogue with your or your loved ones financial advisor to evaluate available resources and chart a path forward. If your loved one’s financial priorities have changed, then theirinvestment choices should reflect that.
Double-check legal documents.
It is also important to review:
· Your will. Review your beneficiary designations for your valuables and, whenever possible, discuss this with those people. I have actually seen siblings fight over small items like tea-cups. Keeping family unity throughout this process should be a priority. As I said earlier: proactive communication solves a lot of problems. Be as thorough as possible. Some people also have provisions in place for pets.9
· Beneficiary designations on retirement accounts. It seems that most people name their beneficiaries on retirement assets when they open their accounts and never look at them again. Over the years, many things change including marriages, divorce, grandchildren, blended families and deaths. Be sure to check these accounts and make sure the beneficiaries you named years ago are still how you want assets split at death. In many cases, the beneficiaries named on retirement plan accounts and insurance policies take precedence over heirs named in a will, so make sure the correct people are named.9
· Your living will or advance directive. This legal document provides instructions that are implemented if you are unable to communicate or make decisions. An advance directive may include end-of-life wishes.10
· Your Power of Attorney. This document gives another person the right to act on your behalf if you become incapacitated.11
· Your digital executor. Almost everyone now owns digital assets. Digital assets include things like emails, digital currencies and online accounts at places like Amazon. Most state laws require special clauses in wills, trusts, and other legal documents to provide for the management of digital assets. Make sure all of your estate planning documents are up to date and that the documents name a digital executor to access, manage, delete, or archive digital files after your death.12
· Internet and phone passwords. This may seem trivial but many of us have important family documents and mementos stored on our phones. The book, “I’m Dead, Now What?” shares the story of a man who died without sharing his iPhone password. His family wanted to get into the phone and retrieve his photographs as they were considered family heirlooms. Due to Apple’s privacy policy, the family was not given his password and, therefore, could not retrieve his password. All of his photos were lost.
· Any trusts. Depending on the complexity of your estate, you may have established a trust and a means for funding it after death.
Keep track of critical financial documents and make sure they are stored in a safe place.
Make sure family members know where this “safe place” is located. The documents are useless if they cannot be located or if family members don’t even know that they exist.
Apply for Social Security Disability benefits.
It has become easier for people who are younger than age 65 to qualify for benefits than it once was. Early-Onset Alzheimer’s Disease was added to the Social Security Administration’s Compassionate Allowances List.13
In closing, CNBC as reported that Alzheimer’s is the most expensive disease in America.3 Further, it can strain family relationships that were once sound. It is important to put a plan in place, preferably in advance of a diagnosis, to help provide comfort and care for the person with Alzheimer’s and protect family and loved ones.
Sources:
1 Alzheimer’s Association, 2020 Annual Report, https://www.alz.org/news/2020/primary-care-physicians-on-the-front-lines-of-diag.
2 Alzheimer’s Association, 2020 Annual Report, https://www.alz.org/news/2020/primary-care-physicians-on-the-front-lines-of-diag.
3 https://www.cnbc.com/2017/08/03/dementia-villages-for-alzheimers-sufferers.html
4 http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp
5 http://www.alz.org/i-have-alz/just-diagnosed.asp
6 http://www.alz.org/care/alzheimers-early-mild-stage-caregiving.asp
8 https://www.genworth.com/aging-and-you/finances/cost-of-care.html
9 http://www.aarp.org/money/budgeting-saving/info-2016/the-ultimate-guide-to-estate-planning.html
10 https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives
11 https://www.rocketlawyer.com/form/power-of-attorney.rl#/ (or go to https://s3-us-west-2.amazonaws.com/peakcontent/Peak+Documents/Sep_2017_RocketLawyer-Personal_Legal_Forms-Power_of_Attorney-Footnote_11.pdf)
12 https://legaltemplates.net/blog/digital-executor-will-and-testament/
13 https://www.ssa.gov/compassionateallowances/conditions.htm
Cost of nursing home care: https://longtermcare.acl.gov/costs-how-to-pay/costs-of-care.html
- The above material was prepared by Carson Coaching.
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