Caring for Family Member with Alzheimer’s Requires Self-Care First

Read Time: 8:58
Published: Dec 3rd, 2017
Caring for Alzheimer’s Requires Self-Care First
Article Updated:October 31st, 2020

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 spouse's lifestyle if still living.

One of the most significant consequences of having no advance plan for the financial costs and burdens of aging is that family members are often placed into a caregiver's role. 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. 

The role of a family caregiver is often consuming and changes the dynamic within the family. Studies show physical and emotional health changes that affect the caregiver, not to mention the stress placed on their families and career. 

For the person who has Alzheimer's or another form of dementia, their life has now changed forever. They have fear and anxiety. They start living their life in the past. An expert explained to Discover Magazine why it seems those with dementia relive the past.

"Alzheimer's disease first affects the areas of the brain responsible for forming new memories," says Rita Guerreiro, a neurogeneticist at the Van Andel Institute, a nonprofit biomedical research group based in Michigan. 

She explained that those living with Alzheimer's tend to hold onto old memories for a while after the onset of the disease. However, as the disease progresses, these memories will start to fade as well. They will start forgetting faces and family members. 

As dementia progresses, the need for supervision and long-term care increases, placing pressure and stress on loved ones. 

Caregivers Face Health and Family Challenges

If you are a caregiver you must take time to take care of yourself—physically and mentally. It is one of the most important things you can do for yourself as a caregiver. This could mean asking family members and friends to help out so you can enjoy doing something you enjoy to escape the pressure for a while. You may need to seek 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 providing care 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, and affecting 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 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 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 is not available. Remember, health insurance, Medicare, and supplements do not pay for these services. Unless the person has Long-Term Care Insurance, the cost of this care 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 the family decides not 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 family members' stress and providing quality care for the individual. These families experience less stress and have more time to be family and not deal with the pressure of being a caregiver.

If you are unsure your family member has a Long-Term Care policy, check their bank records. If you see payments being made to an insurance company, call the company and see what type of policy is in force. 

If the person you are caring for 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. 

You can find the claim's contact information for many of the Long-Term Care Insurance companies by clicking here.

Sometimes a policyholder dies with unused benefits 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 you need help making a claim with an LTC Insurance policy, some in-home health agencies offer help with making a claim even if you choose to use other care providers or recommend a facility. 

Amada Senior Care and LivHOME are two such agencies. 

If no policy exists and no financial resources are available, 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 determine 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, family health history, 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 that people will often 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. The cost of paid long-term care services are expensive and unless you have a Long-Term Care policy, these costs of paid care services come out of income and savings and 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.

About the Author

Linda is a freelance writer interested in retirement planning, health and aging.

Editor's Note

When is the best time to plan for the financial costs and burdens of aging? Generally, experts suggest before your retirement, ideally in your 40s or 50s, when premiums are low, and you have the most available options to choose.

 Be careful. While Long-Term Care Insurance is affordable, premiums can vary dramatically between companies for the same coverage. Not all insurance agents or financial advisors work with more than one or two companies, nor do they usually understand underwriting, policy features, partnership programs, case management, and claims.\

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LTC News Contributor Linda Kople
Linda Kople

Contributor Since
October 31st, 2017

Freelance writer interested in retirement planning, health and aging.

About the Author

Linda is a freelance writer interested in retirement planning, health and aging.

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