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First Steps to Take when a Loved One is Diagnosed with Dementia

by Martha Stettinius, Dementia Expert
February 01, 2013

Question: My sister and I just found out that my mother has been diagnosed with dementia. What are some of the first things we should do?

Answer: I’m sorry you are going through this. The initial years of coming to terms with the diagnosis, and finding appropriate support for your mother and yourself, can be very challenging. Your county’s Office for the Aging may offer free counseling or a caregiver support group specifically for dementia caregivers. Their counselors should be able to talk to you about care options such as in-home care, assisted living, and “memory care” facilities for people with dementia, and ways to pay for it. They may also connect you with adult day programs in your area for people with dementia, respite for caregivers, and workshops that train family caregivers to advocate for themselves and their loved ones. Contact the National Association of Area Agencies on Aging to find your local office (www.n4a.org, 202-872-0888). The Alzheimer’s Association can offer further support (www.alz.org, 800-272-3900), and your county may also offer free caregiver counseling through their Department of Family and Children’s Services.

Also consider hiring a geriatric care manager to meet with you, your mother, and your sister to assess your mother’s needs, your needs, and possible next steps. A geriatric care manager can also help you navigate the healthcare system. Contact the National Association of Geriatric Care Managers to locate a professional in your area (www.caremanager.org, 520-881-8008).

Does your mother need help with shopping, cooking, cleaning, bathing, dressing or other tasks? If she has private long-term care insurance, benefits can help pay for this kind of care in the home. Unfortunately, Medicare does not cover such long-term care, so bringing help into the home usually means paying out-of-pocket or finding family members, neighbors, or respite volunteers to help.

Also, you may want to request a thorough neuropsychological exam for your mother that will help determine the cause of the dementia. Doctors can diagnose “probable Alzheimer’s disease,” the most common type of dementia, with 90% accuracy by ruling out other causes of cognitive decline. (There are over 100 other types of dementia.) A medical history can rule out depression; lab work can rule out urinary infection, thyroid dysfunction, and vitamin deficiencies; and a CT scan and MRI can rule out strokes, trauma and tumors. Vision problems can also exacerbate dementia, if your mother has not had her eyes checked recently.

Ask about the prescription medications available to lesson the symptoms of Alzheimer’s disease (they can help for about 3 years, but do not slow the progression of the disease). Research suggests that a combination of two types of medications—Namenda plus a cholinesterase inhibitor such as Aricept—is more effective at relieving the symptoms of Alzheimer’s disease than treatment with only one type.

I’d also recommend that you take your mother to an elder law attorney right away to discuss Medicaid planning and to complete a Durable Power of Attorney so you or your sister can make legal and financial decisions for her as her dementia progresses. Complete as well a Health Care Proxy (for medical decisions) and a Living Will (for her end-of-life preferences). To find an elder law attorney, contact the National Academy of Elder Law Attorneys (www.naela.org, 703-942-5711). To further protect your mother’s assets in case she applies for Medicaid, consider meeting with a financial planner.

Finally, please be patient with both your mother and yourself. Try to remember that what your mother might appreciate most from you, if you live nearby, is simply your presence. As you tackle the responsibilities of caregiving, try to slow down enough to enjoy your time with her. Even if they eventually lose their language in the advanced stages of the disease, people living with dementia are still “in there,” capable of feeling a full range of emotion and connection with others.

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Martha Stettinius was a “sandwich generation” caregiver for 8 years for her mother with dementia, and is the author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir.” An editor with a master’s in English Education from Columbia University, she blogs for caregivers.com and serves as a volunteer representative for New York State for the Caregiver Action Network.

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