Many professionals and organizations focus on Alzheimer’s research and statistics. I’m grateful that they gather information to guide future treatment, but years in the trenches of clinical practice and caring for my mom through Alzheimer’s disease have made me more concerned about empowering professional and family caregivers to do what we need to do today. I suppose it’s a “chicken, or the egg” thing. Both are important, and they are undeniably entwined, but reasonable people can agree to disagree about which came first, or in this case, which they consider the immediate priority. Researchers emphasize the “what,” but I’m dedicated to the “so what?” Here’s some Woodsonisms.
Alzheimer’s disease and other dementias are not normal aging. If humans ever reach the maximum age limit that scientists estimate for our species (about 120 years,) all adults might develop dementia, but not today. There is no such thing as “senility;” dementia is related to aging, but it is not a mandatory outcome of getting older. When someone shows problems with memory, or other brain functions, suspect some kind of disease process.
Alzheimer’s is one of several types of dementia, just as apples, oranges and bananas are fruit; blouses, scarves and gloves are clothes; German shepherds, Siberian Huskies and Toy Poodles are all dogs. Whatever the cause, dementia is:
Persistent – Mom has good and bad days, but even her best days are not as good as when her brain was healthy.
Progressive – It always gets worse. Over the years, Dad has fewer good days, and they are not as good; he has more bad days, and they get worse.
Always steals independence– If memory tests suggests poor brain function, but Grandmom does everything as well as ever (manages money, medicines, personal care, and her household, bakes her signature pies, drives, plays poker, etc.,) you need more specialized testing. Screening tests may not be accurate in people with vision, hearing, mobility, and educational challenges, or English as a second language. However, if the testing is normal, but Auntie isn’t handling her business as well as she used to, she may be too intelligent for that particular test, or she may have Minimal Cognitive Impairment (MCI). In this condition, the person, or family recognizes problems in brain function, but the test results don’t meet the cut-off for dementia. Some forms of MCI progress to Alzheimer’s and others do not; trained professionals should walk with you as you watch and wait.
It might not be dementia. Older brains are more vulnerable. Doctors can often reverse changes caused by medicines, infections and other conditions, but
Dementia is a terminal illness. People die of dementia because muscles don’t get the right nerve signals. Incoordination causes dangerous falls and aspiration pneumonia (muscles can’t keep food and saliva out of the airway.) Would you subject Grandpa to cancer chemotherapy without a pathology report, documenting the presence and type of tumor? Why accept dementia medication without the proper investigation? Today, specialized testing is limited to research, or by lack of insurance coverage, but there are specific clinical findings. As soon as you suspect changes in life skills, or brain function, find a specialist to do the testing. Start with your primary care physician, but don’t stop there. Most PCPs are do not have specialized dementia-training, but they can start the evaluation, and begin to rule out reversible causes of brain failure. They can also refer you to local geriatricians, Alzheimer’s research centers, geriatric psychiatrists, neurologists, or neuropsychologists.
Early detection is essential. I’m not a fan of the advertised dementia medications, or their claims to work best in the earlier stages (I believe care and respite services give families a better bang for their buck.) I do believe the faster you find out what you’re dealing with, the faster you can become an informed, effective advocate for your senior and yourself.
You are not alone. The number of families touched by dementia is skyrocketing. Call the local Alzheimer’s association chapter to find a support group, but you can also start one. Anywhere you look, you will see caregivers, just like you, struggling in isolation. Talk to your human resources office, employee assistance program, or just start a brown-bag lunchtime group. Talk to the health ministry at your house of worship. I know of several churches that banded together to offer caregiver education and support. The Alzheimer’s Association, your local Area Agency on Aging, Department on Aging, and hospitals can recommend speakers. Click my Caregiver Resource tab for the “5 Keys to Caregiver Survival” and a resource list.
Also look for the second edition of TO SURVIVE CAREGIVING: A Daughter’s Experience, A Doctor’s Advice in December 2013.