According to the national Alzheimer’s Association, in 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.
Also, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in the same year. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report symptoms of depression. Remember, this is just the cost for caregivers.
There’s also the possibly bankrupting cost of medical and other care for the person with the disease to consider. The Alzheimer’s Association and the ADEAR Center, which is the Alzheimer’s research arm of the National Institute on Aging, have suggestions that can help.
Below are some tips from these agencies and other sources:
1. Obtain help from a good financial planner. This person should be well informed about the costs of Alzheimer’s disease and of Medicaid law in your state. Financial planners can help you look for potential resources, find tax deductions and guide you in investments or trusts that may help make your money last longer. Be certain to validate the credentials and experience of the financial planner you choose.
2. An elder law attorney could also be a valuable addition to your team. This person could help your family decide how to plan for the enormous cost of Alzheimer’s disease or other dementia care. Common dementia care costs include ongoing medical treatment for Alzheimer’s-related symptoms, diagnosis and follow-up visits, standard medical treatment, safety-related expenses in the form of home modifications, and prescription drugs. Also, you may need advice about paying for help in the form of in-home care providers, adult day care, assisted living and/or nursing home care. As with the financial planner, check the background and experience of the elder law attorney you choose to help you with this important step.
3. The National Institute on Aging (NIA) has an excellent list of informational booklets that you can download or order. The booklets range from "About Paying for Nursing Home Care" to “Money Matters,” “Helping the Person With Dementia Settle Financial Issues” and "Legal and Financial Planning for People With Alzheimer’s Disease." All are free or very inexpensive, so be sure to browse the NIA site. Make use of these resources.
4. For those already caught up in the expensive drug treatments for early stage Alzheimer’s, there’s some new information that’s not only important for your loved one’s health but one that can save you significant money. Studies have shown that many drugs given in early to mid-stage Alzheimer’s are no longer helpful and may even be harmful to those in later stages. Yet, many doctors keep prescribing them. The problem is, not only are these drugs expensive, the side effects may cause fainting, falls, urinary tract infections, additional confusion and other issues that people with Alzheimer’s don’t need worsened. For more on that topic see Medications Should Be Carefully Controlled as Alzheimer’s Advances.
5. Take advantage of low-cost and free community services. Your local Area Agency on Aging can help. Search the Eldercare Locator for services in your area. The Alzheimer’s Association, the Alzheimer’s Foundation of America, your church, local block nurse organizations where available and the Meals-on-Wheels program are all possible resources for inexpensive or free help.
6. Support groups, whether online or in person, are made up of people who are or have been in your shoes. Many of these people can offer emotional and practical assistance. Just be certain to validate anything that you are told in a group since each situation is different.
Don’t try to travel this journey simply by relying on family and friends. You will need their support and help - there’s no question about that. However, when it comes to finances, you’ll do well to make use of all of the special resources and experience that you can find.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.