Caring for Alzheimer’s Requires Self-Care First

3 Min Read
Linda Kople

Dec 3rd, 2017

If you find yourself or a family member caring for a person with Alzheimer's or dementia, the stress impacts more than you and your family. It affects your health unless you take the proper steps. Have you prepared for your future decline in health due to aging?

Nearly 6 million Americans of all ages have Alzheimer's disease. Of the estimated 6 million Americans living with Alzheimer's dementia in 2021, 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, according to 2021 numbers: 

People aged 65-74 make up 5.3% of those with Alzheimer's, 13.8 percent of people aged 75-84, and 34.6 percent of people aged 85 or older.

Few Families are Prepared 

Many people inflicted with Alzheimer's, or another form of dementia did not have Long-Term Care Insurance to help them pay for the expensive costs of supervision and long-term health care. The impact is tremendous on the person's family and assets. 

An older spouse or adult child or in-law, by default, becomes a caregiver. This crisis management places a burden on the caregiver and impacts the spouse's lifestyle if they are 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 family member 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 also start to fade. The person with Alzheimer's will begin forgetting faces and family members. 

As dementia progresses, the need for supervision and long-term health 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 want to escape the pressure for a while. You may need to seek help from a home health care service if the financial resources are available. 

Taking these actions can bring you some relief. It also may help keep you from getting ill or depressed.

Long-term health care services are not cheap and drain savings which changes lifestyle and legacy. Once the responsibility of caregiving becomes too high, paid professional care takes over. 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 caregiving leads to various emotions, from guilt to anger. It also affects 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 careers, spouses, children, and other obligations. 

If money is short, it can be a significant concern for the family caregiver. The pressure on the caregiver's family should also be considered. Often a primary family caregiver leaves their career since they cannot find other family members to help them take care of their loved one.

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, you must reduce stress and maintain your own health if you find yourself in the situation.

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 caregivers to take care of themselves first and then "share the care."

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 and not enough money to pay for professional care. Don't depend on traditional insurance programs since health insurance, Medicare, and supplements will not pay for these services. Medicaid will pay for long-term health care, but the care recipient must have little or no income and assets to qualify for those benefits. Long-Term Care Insurance will pay for these long-term health care costs, but you must own the policy before your health declines.

If a Long-Term Care Policy is in Force - Use It!

Sometimes, a person with 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 2021, over $12.3 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 there is a policy for long-term care in place, start the process to receive benefits immediately. LTC NEWS provides free assistance with no obligation to help you or a loved one complete the claims process with a Long-Term Care Insurance policy. We have teamed up with Amada Senior Care, who will do all the work, free with no obligation. 

You can also get support in finding quality caregivers and get recommendations for a proper care plan, whether a person has a policy or not. - Filing a Long-Term Care Insurance Claim | LTC News

 If you are the caregiver for a person who has a Long-Term Care policy, make sure they make a claim and get the help and benefits they deserve. There is no legitimate reason to save the benefits for the future if the need is now. 

Sometimes a policyholder dies with unused benefits since the family decided to "save it for later." Get the help and file a claim. Be sure the proper care is provided, and the burden on other family members is reduced.

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 support each other. Ask your doctor, check online, or contact the local chapter of the Alzheimer's Association.

Now think about your plan 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. Most people purchase Long-Term Care Insurance in their 50s.

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, 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.
  • 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 health care. Even if you obtain a Long-Term Care Insurance policy, you should decide 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 for you and your care. Keep in mind that people will often say they will take on this responsibility, not understanding exactly what it is and how it will impact their 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 bone density tests. Men should address prostate issues. Both men and women should not forget regular colonoscopies.

Being a caregiver is physically and emotionally hard on everyone involved. The cost of paid professional long-term health care is expensive. Unless you have a Long-Term Care policy, the costs of care services will be paid from income and savings, adversely impacting lifestyle and legacy. An advance plan will reduce a caregiver's stress and burden, making it easier for everyone.

Avoid crisis management in the first place by planning now. If you are a caregiver, take the time to care for yourself and your family.