An estimated 5.8 million Americans of all ages have Alzheimer's disease. Of the estimated 5.8 million Americans living with Alzheimer's dementia in 2019, an estimated 5.6 million are age 65 and older, and approximately 200,000 individuals are under age 65 and have younger-onset Alzheimer's.
The percentage of people with Alzheimer's dementia increases dramatically with age:
Three percent of people age 65-74, 17 percent of people age 75-84, and 32 percent of people aged 85 or older.
Few Families are Prepared
Many people inflicted with Alzheimer's, or dementia did not have any advanced plans like Long-Term Care Insurance. The impact is tremendous on the person's family and assets. An older spouse or adult child or in-law, by default, become caregivers. This crisis management places a burden on the caregiver and impacts the lifestyle of the spouse if still living.
One of the most significant consequences of having no advance plan for the financial costs and burdens of aging is family members are often placed into the role of a caregiver. Generally, one becomes the primary caregiver. This role of a caregiver places physical, emotional, and financial stress on them and their family. The result is often resentment.
If you are finding yourself in a situation of being a caregiver, or have a spouse who already is a caregiver, their first responsibility should be to their health and family. The role of a family caregiver is often consuming and changes the dynamic between within the family.
Caregivers Face Health and Family Challenges
Taking care of yourself—physically and mentally—is one of the most important things you can do as a caregiver. This could mean asking family members and friends to help out, doing something you enjoy or getting help from a home health care service if the resources are available.
Taking these actions can bring you some relief. It also may help keep you from getting ill or depressed.
Once the responsibility of caregiving becomes too high, paid care takes over. The cost of care services are not cheap and drains savings and changes lifestyle and legacy. Because of the cost, many families continue in the caregiving role despite the difficulty, burden, and stress.
Memory Care is Hard
Alzheimer's disease caregivers are faced with a multitude of responsibilities when caring for a loved one suffering from the disease. The impact on caregivers leads to a variety of emotions, from guilt to anger, as well as have an effect on their own physical and financial well-being.
Remember, a caregiver's family responsibilities don't end when they become a caregiver. Many caregivers still have a career, spouse, children, and other obligations.
The pressure on the caregiver's family should also be considered. Often a primary family caregiver leaves their career since they are unable to find other family members to help. If money is short is can be a significant concern.
If a spouse is taking care of the other spouse, generally, they are older, and the impact on the caregiver spouse is even more significant. While you can get angry that no advance plan was put in place, if you find yourself in the situation, you must take action to reduce stress and maintain your own health.
Tips for Caregivers
The National Institute on Aging suggests the following ways to take better care of yourself:
- Ask for help when you need it.
- Eat healthy foods.
- Join a caregiver's support group.
- Take breaks each day.
- Spend time with friends.
- Keep up with your hobbies and interests.
- Get exercise as often as you can.
- See your doctor regularly.
- Keep your health, legal, and financial information up-to-date.
Cynthia Steel, RN, MPH encourages a caregiver to first take care of themselves and then to "share the care." See her comments: https://youtu.be/7icv-hpIjd0
Many caregivers fail to ask for help. They either feel guilty about asking others to do things they think are their responsibility, or they think others will not be willing to help.
In some cases, there is nobody else available to be a caregiver. Money or Long-Term Care Insurance are not in place. Remember, health insurance, Medicare, and supplements do not pay for these services. Unless the person has Long-Term Care Insurance the cost may be an issue.
If a Long-Term Care Policy is in Force - Use It!
Sometimes a person who has Alzheimer's or dementia has a Long-Term Care policy, but they fail to seek benefits from the policy since they feel they need to save it for "a rainy day."
In 2019, over $11 Billion in Long-Term Care Insurance benefits were paid to American families easing the stress on family members and providing quality care for the individual.
If the person with Alzheimer's or dementia has a Long-Term Care policy, make sure they make a claim and get the help they deserve. There is no legitimate reason to save benefits for the future if the need is now. Sometimes a policyholder dies with unused benefit since the family decided to "save it for later." Get the benefits and file a claim. Be sure the proper care is provided, and the burden on other family members is reduced.
If no policy exists, don't be afraid to ask for the needed help from other family members.
National Institute on Aging shares these tips about asking for help:
- Remind yourself that it's okay to ask for help from family, friends, and others. You don't have to do everything yourself.
- Ask people to help out in specific ways, like making a meal, visiting the person, or taking the person out for a short time.
- Call for help from home health care or adult day care services when needed. To find providers in your area, contact Eldercare Locator: http://www.eldercare.gov/
- Use national and local resources to find out how to pay for some of this help, or get respite care services if they qualify for these programs.
You can also join a support group of Alzheimer's disease caregivers. These groups meet in person or online to share experiences and tips and give each other support. Ask your doctor, check online, or contact the local chapter of the Alzheimer's Association:
Now think about what your plan is for addressing the financial costs and burdens of aging? What have you done differently than your elder parent or family member? The time to plan is before you retire as part of your overall retirement planning.
Address Long-Term Care Before Retirement.
Here are some hints:
- Consult a lawyer about setting up a living trust, durable power of attorney for health care and finances, and other estate planning tools. Keep in mind trusts won't protect your assets from the spend-down requirements for Medicaid. If you have assets, then you should consider ways to protect those savings. Learn about costs of care, Medicaid spend-down requirements and other state specific information in your state by clicking here
- Consult a Long-Term Care Insurance Specialist and see if you qualify for an LTC Policy. You will need to discuss your health, your family health history, your retirement plans, and assets with this individual so they can make the appropriate recommendations. If you are in your 40's and 50's premiums are very affordable. Be sure to ask if a Partnership LTC policy is available. These plans provide additional dollar-for-dollar asset protection.
- Speak with family and close friends to decide who will take responsibility for you if you have Alzheimer's or dementia or any other need for long-term healthcare. Even if you obtain a Long-Term Care Insurance policy plan on which family member or friend will work with the agent and insurance company when the time comes to make a claim. If no policy exists, decide which family member will be responsible. Keep in mind, often people will say they will take on this responsibility not understanding exactly what this responsibility is and how it will impact their own health and family.
- Put together a record of your bank accounts and investments, property, and other vital information, so make sure the family knows where it is located. Keep this up-to-date.
- Always take care of your health by having regular check-ups, including required lab work. Some people say they feel fine, so they don't think it is necessary. If you are over age 40, it is essential.
Women should make sure they have Mammograms and their bone density tests. Men should address prostate issues. Both men and women should not forget regular colonoscopies.
Being a caregiver is hard for both them and their own family. Cost of paid long-term care services are expensive, and unless you have a Long-Term Care policy, the costs of paid care come out of income and savings and will impact lifestyle. An advance plan will reduce the stress and the burdens being a caregiver will have on an older spouse or adult child or in-law.
Avoid crisis management in the first place by planning in advance. If you are a caregiver, take the time to take care of yourself and your family.