THE ALZHEIMER'S ACTION PLAN
Alzheimer's Disease ("AD") is a terrifying disease. Per Statista.com, for the period 2007-2009, AD was the fifth leading cause of death for those over 65, accounting for about 5% of all deaths (the other leading causes of death in this period were Heart Disease (28%), Cancer (22%), COPD (7%), and Stoke (6%)). But even though AD is not the most dangerous disease, it is the most feared disease. AD is an incurable, degenerative brain disorder that breaks down and destroys brain cells causing a decline in memory, behavior, and mental capabilities. It is the most common cause of dementia in America; it steadily progresses until the mind is essentially destroyed; and death may not occur until years after the mind has gone. While on average, the life expectancy of a Person with Alzheimer's ("PWA") is 8 to 10 years, it can be as short as 3 years or as long as 20 years. The average time between the onset of symptoms and diagnosis is 3 years.
While some minor memory and brain function loss is normal with advanced age, AD is NOT a "normal" part of aging. The cause of AD is still unknown, but suspected risk factors are environmental [exposure to chemicals], genetic predisposition, social isolation, mental inactivity, obesity, high blood pressure, poor diet, drug and alcohol abuse, and physical inactivity (especially in middle age). Although the risk of developing AD dramatically increases after age 70, only about a third of elders aged 85 and older develop the disease. The following table shows the incidence of AD from age 65 to age 90:
But the incidence of AD is increasing. According to the Alzheimer's Association, there are about 5 million people today who are suffering from AD, but by 2050 there may be as many as 16 million, a three-fold increase. This increase in AD is attributed to the rapidly growing
population aged 65 and over, and better and earlier AD diagnosis and reporting. Unfortunately, there are few easily identifiable symptoms in the early stages, and, therefore, by the time AD is diagnosed, a PWA may have had AD for 3-5 years or longer.
There are many causes of dementia, including medications, dehydration, chemical imbalances, depression, head injuries, minor strokes, and other illnesses, and many of these causes are treatable and reversible, so it is very important to see a qualified physician and get a professional diagnosis as soon as any serious memory or mental problems are suspected. Remember, dementia is not normal, even in the elderly. In addition, an early diagnosis of AD will permit the use of new drugs that can lessen or stabilize AD symptoms if administered in the early stages.
So, what should you do if you or a loved one is diagnosed with AD?
Answer: Create an ALZHEIMER'S ACTION PLAN!
The normal reaction of most people to a diagnosis of AD is shock, followed by fear and a sense of loss, and then the Five Stages of Grief (denial, anger, bargaining, depression, and acceptance). However normal this is, it accomplishes very little. As soon as the initial shock wears off, the PWA and their family should start to create an Action Plan for the purpose of asserting some degree of control over their future. This is a critical time for the PWA and their family. They have to start preparing and planning now for what will come in the future. The following suggested Action Plan lists recommended steps to be taken. Feel free to add your own additional steps.
Set Up a Team of Experts. The purpose of a Team of Experts is to oversee and confer on care giving, treatment, housing, finances, and legal issues as the disease progresses. Your team should include at a minimum the PWA's doctor, an Elder Law attorney, a financial planner, and a geriatric care manager (see the Aging Life Care Association - www. aginglifecare.org.), plus anyone else you believe should be on the team.
Consult with an Elder Law Attorney. Make an appointment with an experienced Elder Law attorney as soon as possible to get the PWA's personal and legal affairs in order while they still have the legal mental capacity to execute legal documents. While AD generally progresses slowly at first, there are no guarantees as to the time before legal capacity is lost, therefore, it is very important to act quickly. If the PWA does not have these documents in place, and does not have legal capacity, the Probate Court will have to appoint a legal Guardian and a Conservator to make health care and treatment decisions for them and manage the PWA's finances. If the PWA already has estate planning documents, they should be carefully reviewed to see if they are up to date and sufficient for PWA's. The Elder Law attorney will draft or update the legal documents to include customized language and clauses specific to the problems and legal issues common to PWA's. These documents will generally include:
(to be used only during lifetime)
- Durable General Power of Attorney (for finances - to take effect immediately)
- Durable Power of Attorney for Health Care and Designation of Patient Advocate
- Advance Directive for Health Care or Living Will (for End-of-Life care and treatment decisions)
- HIPPA Authorization and Designation of Personal Representative (for release of medical records to your care givers and agents)
(to be used both during life and after death)
- Revocable Living Trust
- Designation of Digital Custodian (for online records and accounts),
(to be used only after death)
- Last Will and Testament
- Designation of Funeral Representative
- Deeds (for real estate)
- Assignments and Bills of Sale (for personal property)
Medicaid Planning Documents
- (Depending upon the PWA's personal situation, care requirements, and finances)
(3) Educate Yourself. Learn as much as you can about AD so that you will know what to expect and how to actively participate in care and treatment options as the disease progresses. The best place to start is with the Alzheimer's Association (www.alz.org). To learn about the latest research and clinical trials, check out the National Institute on Aging's Alzheimer's Disease Education and Referral Center (www.nia.nih.gov/alzheimers).
(4) Join a Support Group. Facing all the challenges of AD by yourself is asking for trouble. The PWA and their caregiver will both need the understanding, support, and knowledge of an AD support group. Connect with the Alzheimer's Association (www.alz.org) and their local chapters. Local chapters often have Early-Stage Programs just for those with a recent diagnosis. Also ask your doctor or hospital about support services near you. There are generally separate support groups for PWA's and their caregivers.
Consult with a Financial Planner. Because of the potentially huge costs of care, you should seek the help of a financial adviser who has expertise in long-term-care planning. A financial planner will review available income streams and assets for paying for care at various stages of the disease. You may be able to tap the cash value in your life insurance policy or the equity in your home. And those with long-term-care insurance policies can offset some costs of adult day care, home health care, assisted living and skilled-nursing care. To get a handle on potential costs, ask a care manager or neurologist to suggest care options as the disease progresses. The goal is to keep the PWA as independent as possible for as long as possible. The financial planner could create a financial plan that accounts for a period in adult day care or assisted living while preserving funds for more expensive nursing home care in later years.
Confirm your Medical Insurance Coverage. It is very important to know what your medical insurance will cover and what it won't cover as AD progresses and more care is required. If you are wealthy, you simply pay as you go. If you are among the 1% or so of the population who buy Long-Term Care Insurance, your LTC insurance should pay for just about any of the your options, including adult foster care, assisted living, and nursing homes. If you are not wealthy and do not have LTC insurance, and if the PWA is over 65, we are usually talking about Medicare. While Medicare will continue to pay for doctor and hospital visits, prescriptions, and diagnostic tests, Medicare generally does NOT cover in-home care expenses or custodial care for PWA's, whether it is in adult foster care, assisted living, or a nursing home. In order to have that coverage, you generally have to qualify for Medicaid, which has strict income and assets limits. Consult with an Elder Law attorney who does Medicaid Planning to see if the PWA might be able to qualify.
Familiarize Yourself with Various Care Facilities. Early on, the PWA will probably be able to continue to live at home, either alone, with a family member, or with the assistance of family members or home-care workers. But there will usually come a time in the not too distant future, as the PWA ages and the disease progresses, when the PWA will need 24-7 care that is not available at home or by their spouse. Rather than wait for a crisis and then start looking, a person in the initial stages of AD, with the help of a family member and the care manager, should start visiting various care facilities, such as, assisted living, memory-care, adult foster care, respite care, and nursing home facilities. There is often a waiting list for admission to the most desirable facilities, so advance planning and selection is necessary.
Build a Personal Care Network. Create a Personal Care Network of family members, friends, and neighbors who you trust to help with bill paying, medications, groceries, meal preparation, transportation, house cleaning, and other tasks. Again, attempting to do everything by yourself while caring for a PWA is asking for trouble. The care group can also help to stay in touch with the Team of Experts, long-distance family members, and the local social service agencies.
Contact Local Social Services Agencies. Your community's Area Agency on Aging is also a good resource for finding services and professionals you may need over time. The agency can provide information on elder-law attorneys, adult day care, transportation, assisted-living facilities, respite care, and geriatric care managers. (Find your local agency at www .eldercare.gov.)
(10) [OPTIONAL] Have a Discussion with the PWA about Death with Dignity. This is a very sensitive subject, and many people, for personal or religious reasons, would rather not discuss it, and I understand that. But for others, this is an opportunity to have a frank and honest discussion with the PWA about ending life with AD on their own terms rather than suffering through the final stages of AD (and often other chronic illnesses or conditions associated with old age). In addition, it is common for PWA's to also suffer the indignity of being incarcerated in a nursing home or memory care unit in the advanced stages of AD. There are options for hastening death besides moving to one of the five states that has a Death with Dignity (Physician Assisted Suicide) Act, such as, Do Not Resuscitate Orders, refusing all medical treatments that would prolong life, and refusing artificial feeding and hydration, among others. Look for a post soon discussing these and other options.
Whether it is drawing up the Action Plan, visiting facilities, or meeting with others who have AD, it is important to keep moving. The worst and most expensive thing you can do is to hide your head in the sand and do nothing.
(Posted July 7, 2017)
For More Information:
If you would like more information about AD planning, estate planning, or elder law, please contact attorney Robert Teeter at email@example.com or 231-250-6057.