A World without Alzheimer’s Disease

Memory loss is not a normal part of the aging process. Let me repeat that. Memory loss is not a normal part of the aging process. You don’t become forgetful because you are aging. Permit me to rant, as I observe the first anniversary of the launch of my website and blog.

We are the world!

We are the world!

I attended a local arts event recently and introduced myself to a young woman who was with her teenage son. We shared a small table while munching on appetizers. I mentioned that I was an author who had recently self-published my memoir of caring for my mother who had Alzheimer’s (AD). The woman’s face lit up. She said she was caring for her father who had mild cognitive impairment. Her parents had divorced years ago, so the role of caring for him fell to her as an only child. She told me that several years’ prior, her father was exhibiting some strange behavior. She took him to his family doctor at that time who said his memory loss was just part of the aging process. Only recently the doctor put him on Aricept. She explained that he was having some difficulties in the late afternoons.

I asked if her father had been diagnosed by a neurologist and was told that he hadn’t. I encouraged her to have him tested, and gave her information about our local memory disorder clinic where my mother was tested and diagnosed with Alzheimer’s and vascular dementia. I also mentioned that the clinic offered a support group for family members.

The earlier a medical professional can diagnose AD, the more time there is for long-term planning by the individual and family, and putting support and structures in place to care for the person with the disease.

I gave the woman my card and my e-mail address. I hope she has been able to get her father the help that he needs, and the support and information she will need to make her caregiving journey more effective and fulfilling.

In this day and age, I think it is a crime that family doctors who deal with elderly patients aren’t more aware of symptoms of Alzheimer’s or other forms of dementia. Age-related memory changes are not the same thing as dementia. Permit me to try to make the distinction between temporary forgetfulness and memory loss in those of us who are aging.

Age-related Forgetfulness                                            Memory Loss

Forgetting names at times  vs Forgetting what your relationship is to that person
Forgetting temporarily where you put your car or house keys  vs Forgetting what the key is used for
Forgetting briefly while in the car where you need to turn to get to the store  vs Not finding your way home
Momentarily forgetting the day of the week  vs Not knowing the month or year
Walking into a room and forgetting why you entered  vs Not remembering where your bathroom is

Stress, infections, and medications can also cause memory issues. But further testing, rather than assumptions, is what’s really needed to determine the source of this memory decline. Don’t let your doctor get away with this age bias. It is important to pay attention to patterns of forgetting information. They can be markers to help determine the difference between normal aging and pathological aging.

Alzheimer’s is a fatal disease. Yet, according to a study published March 5, 2014, in the journal Neurology, researchers found that the number of deaths in 2010 due to AD in people 75+ could be six times higher than the official count. This would have made AD the THIRD leading cause of death behind heart disease and cancer. Instead, it was listed as the SIXTH cause of death in this age group. By 2050, the number projected to die of AD is 1.6 million, or 43% of all older adult deaths.

A study by The National Institute on Aging* notes: “Underreporting of AD as a cause of death on death certificates is a well-known phenomenon. Many others have dementia-related conditions, such as aspiration pneumonia listed as the primary cause of death, while the underlying disease, AD, is never reported.”  When I read this, I went to check my mother’s death certificate. Cardiopulmonary arrest/arterosclerotic heart disease is listed as her immediate cause of death. Hypertension, dementia, and osteoporosis are given as “significant conditions contributing to death.”

Alzheimer’s now afflicts about 35 million people worldwide. Until we as a society face the need to advocate for Alzheimer’s research and a cure, we will not come close to a world without the disease. The Alzheimer’s Association reports that only 45% of people with Alzheimer’s or their caregivers report being told of their Alzheimer’s diagnosis.

To be part of a solution is empowering. I promise to do my part to continue to inform and advocate. Here are a few considerations for all of us to come together to help create a world without Alzheimer’s:

  • Help break the “stigma” of living with AD. Don’t be afraid or embarrassed to talk about the disease and how it impacts your loved one and your family. Keep informed of the latest research in the field.
  • Help advance vital research. Check out the clinical trials and studies in your area and participate. You don’t need to have dementia to qualify. The Alzheimer’s Association has a free service called TrialMatch that will send you information about research near where you live. You can decide if you want to participate or not. There’s no obligation when you register.
  • Raise funds for important research. The Alzheimer’s Association plans annual walks and other fundraising efforts that you can support through participating and/or with a financial donation.
  • All parts of our communities can organize to adopt dementia friendly practices for the good of all. Talk to your pastor, rabbi, imam, your congressional representatives, and to local business owners to make our religious institutions, local communities, and businesses more “dementia friendly.” This website has information how to get started: http://www.actonalz.org/dementia-friendly-toolkit.

I will observe the first anniversary of launching this website on June 30. It is also my Mom’s ninth death anniversary. In the past year, I have covered a variety of topics from sundowning, to caregiver guilt, to the role of music, from communicating with children and teens, to the communication challenges of aphasia. You can check out these and other topics by going to my website’s archive at the right hand side of this article. Then choose a past blog by topic or month. I encourage you to pass along any of the links to help your family and friends share in your caregiving journey.

Thank you to all who have been following my blog as subscribers, making comments, and sharing your own journeys. Thanks also goes to my husband for his love and support, to my sister Marcia for providing editorial and artistic support, to Merle Stern for her beautiful meditations, and to my friend Priscilla Dunning for sharing her poems.

I look forward to another year of providing information and resources so you know that you are not alone. This reminds me of a popular song I used to sing as a child, “Side by Side.”  One of the lines of the lyrics goes: “We don’t know what’s coming tomorrow, maybe it’s trouble and sorrow, but we’ll travel the road, sharing our load, side by side.”

It’s going to take all of us to spread our knowledge and experience, and to advocate on behalf of those who cannot. I have great hope that someday in my lifetime there will be a world without Alzheimer’s disease!

June 25 world people banner-1375492_640

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Frankie Lane and Kay Starr perform her hit song, “Side by Side:” https://youtu.be/xuWFdxmJNgg.

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Dr. Jennifer Ashton explains some of the early warning signs of Alzheimer’s in this video: https://youtu.be/EGHdHsAfmdQ.

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Check this recent news release from John Hopkins about the need for early diagnoses: http://www.hopkinsmedicine.org/news/media/releases/lack_of_diagnosis_creates_added_risks_for_those_with_dementia.

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If you haven’t seen my webinar with Mike Good of “Together in This,” with tips on managing caregiver stress, check it out here: http://togetherinthis.com/trove-tips-managing-stress/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

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