African Americans Speaking Out About Alzheimer’s Disease

This month, we learned that former model and restaurateur B. Smith has been living with Alzheimer’s Disease.  Smith, dubbed the “black Martha Stewart” due to her career paths as a designer, author, and TV host, shared her story about remaining steadfast in fighting the disease, and having the support of her husband and business partner.

Hearing B. Smith’s candidness about the uphill battle of living with Alzheimer’s was empowering, especially since African Americans typically do not share their stories about Alzheimer’s.  Being an advocate and putting a face on what Alzheimer’s “looks like” in the African American community is a powerful testimony for and from Smith; her story validates the experiences of those living with Alzheimer’s, and the caregivers and families who care for their loved ones each and every day.

Alzheimer’s Prevalence

More than 5.2 million Americans live with Alzheimer’s, with over 200,000 being those 65 years and younger.  Of this population, 3.2 million are women and 1.8 million are men; women make up two-thirds of those living with the disease.  It is estimated that by 2050, the number of those with Alzheimer’s will triple from 5 million to 16 million.

Last year, almost 16 million American families and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.  This unpaid care has the value of $220.2 billion.

When it comes to medical care, Alzheimer’s is the most expensive condition in America.  With the projected tripling of those living with Alzheimer’s, this medical care expense strain will be astronomical.

Concerns Surrounding African Americans & Alzheimer’s

Senior African American couple holding handsAccording to the Alzheimer’s Association, many Americans dismiss the early warning signs of Alzheimer’s, inaccurately believing that what they are experiencing are normal developments in the aging process.  This misunderstanding of the aging process versus Alzheimer’s is especially true for African Americans, who are two times more likely to develop late-onset Alzheimer’s disease, and other dementias, than whites.  Missing the beginning stages of Alzheimer’s greatly disadvantage African Americans, as we are less likely to receive a diagnosis for our condition, which correlates to delayed treatment and planning.

How Alzheimer’s Disease Affects My Family

During the Summer 2008, my beloved Grandmother was diagnosed with the early stages of Alzheimer’s at the age of 78.  She, as well as us, noticed her having difficulty with routine tasks after she had a mild heart attack two years prior.  We decided to tell her general practitioner about our concerns, and he suspected Alzheimer’s, and placed her on a medication regimen to slow down the progression of the disease.  It has now been six years since the diagnosis, and we battle this disease every day.  Grandmother’s memory may not be as lucid as it used to be, but she is firmly holding on to the independence she still has, despite the disease.  Seeing her remain steadfast through it all gives me the strength when it comes to caregiving.

Resources for Those Living with Alzheimer’s Disease, & Caregivers

There are programs and organizations established for those who are impacted by this disease.  In order to overcome the struggles both those living with Alzheimer’s and caregivers endure, you have to educate yourself about the disease, and the supports that exist to help you during this journey.

The Alzheimer’s Association is a well-respected organization that works tirelessly to educate and support individuals and families affected by this disease, and create awareness about the prevalence in America and worldwide.  The Alzheimer’s Association has several resources that may benefit those affected:

African Americans & Alzheimer’s:  http://www.alz.org/africanamerican/

Provides information about warning signs, caregivers testimonies, and brain health, etc., specifically for African Americans and families affected.  

Living with Alzheimer’s:  http://www.alz.org/living_with_alzheimers_4521.asp

I Have Alzheimer’s Disease:  http://www.alz.org/i-have-alz/i-have-alzheimers-dementia.asp

Support Groups for Caregivers:  http://www.alz.org/apps/we_can_help/support_groups.a

2014 The Longest Day:  http://act.alz.org/site/TRfr_id=5860&pg=entry&s_src=alzfooter

2014 The Longest Day, a day observed around the world to honor the strength, passion, and endurance of those living with Alzheimer’s.  The goal is to raise funds and awareness to propel the mission of the Alzheimer’s Association.  The Longest Day is held on June 21, 2014, which is the Summer Solstice (the longest day in the year, and the first day of the summer season).  

Other resources for caregivers of those with Alzheimer’s

Help Guide – Support for Alzheimer’s & Dementia Caregivers:  http://m.helpguide.org/articles/caregiving/alzheimer-dementia-caregiver-support

AlzOnline – Alzheimer’s Caregiver Support Online:  http://alzonline.phhp.ufl.edu

Final Thoughts About Alzheimer’s

Education, medical research, awareness, community support, and acceptance are dire so that we can one day live in a world where Alzheimer’s does not rob us of those we love, and their memory.  I love my Grandmother, and Alzheimer’s will never be able to break the bond we have, no matter what lies ahead for us.

(Featured headline image:  Courtesy of A Place for Mom.)

Funding Free Tracking Devices for Children with Autism

Mom with Son Wearing Backpack 1Last week, the Justice Department announced that it would promptly make funding available to provide free tracking devices for children with autism.  The devices will be provided to families with children who are at risk or have a history of, wandering and elopement.  U.S. Attorney General Eric Holder stated that the Department already has the funding needed to make this technology available.  Police departments have been given the green light to apply for funding; departments can use the funding awarded to pay for tracking devices to be allocated to families that want them.  This new plan is modeled after the federal program in place that supplies similar devices to families of those with Alzheimer’s disease.

The wandering and elopement of children with autism have gained much attention due to the tragic passing of Avonté Oquendo, a 14 years old teen who went missing in New York in mid-October.  So many across the nation had hoped and prayed for Avonté’s safe return to his family, including yours truly.  Avonté’s story shone a spotlight on the thousands of children with special needs who are reported missing each year in this country.

The numbers regarding those with disabilities who are reported missing are astounding.  In 2012, there were 30,269 individuals with disabilities who were reported missing, according to the Federal Bureau of Investigation’s (the FBI) National Crime Information Center (NCIC).  Of that figure, 3,570 were those under the age of 21, and 26,699 were those age 21 and older.  The number of children missing in 2012 was noticeably less than what was reported in 2011.  In 2011, 6,340 of those reported missing with a disability were under the age of 21.  If we were to combine those figures, almost 10,000 children with disabilities were missing within the past three years.

The focus on those with autism is dire because children with autism spectrum disorders have a higher risk of wandering and eloping than children with other special needs.  It has been noted that about half of children with autism will wander and elope; close to one-third of these children are nonverbal, and are unable to communicate their identities to someone if they are spotted.  Children with autism who wander from safe environments such as their homes or school grounds have a tendency to seek bodies of water or may have interests in active highways, trains, and the like.  Any of these predicaments or fascinations could cause the child to place her or himself in harm’s way while they attempt to “explore” these new surroundings.

The action taken by the Justice Department and U.S. Attorney General Holder is encouraging; the needs of people with disabilities, especially our children, are in the consciousness of those on the federal level.  This new technology has the potential to save the lives of our children, as well as others who may wander from their safe environments.

What are your thoughts about this new initiative?  Is your family one of many in this country who could benefit from using these tracking devices?  If you are currently utilizing a tracking device to keep your loved one(s) safe, what benefits or drawbacks of this technology have you experienced?  Share your thoughts and stories regarding this subject with me.

(Featured headlining image:  Courtesy of Digital Trends.)

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