Tag Archives: Alzheimer’s disease

Down Syndrome and Alzheimer’s – the Challenges of Diagnosis

Research confirms that by the age of 40, almost 100% of persons with Down syndrome who die have changes in the brain associated with Alzheimer’s disease (AD).  Understanding this link and the challenges of a diagnosis of AD in persons with Down syndrome is important for families and healthcare professionals.

Down Syndrome occurs when a person has three copies of the 21st chromosome instead of the normal two copies.  Studies show that one of the main genes responsible for AD is on the 21st chromosome and is more active in persons with Down syndrome.  Because of this extra copy of the Alzheimer gene, virtually 100% of people with Down syndrome will develop the plaques and tangles in the brain associated with AD, but not necessarily the same memory loss.  Although research is not complete, it is estimated that about 50% of persons with Down syndrome will develop the characteristic memory problems of AD before age 50.

Testing for AD in persons with Down syndrome is often challenging.  Diagnosis of AD is difficult for a number of reasons:

  • Persons with Down syndrome are susceptible to hypothyroidism and depression, which are both reversible conditions but often go untreated and can be mistaken for AD.
  • Side effects of medications taken for either of these conditions can also mimic AD.
  • Normal AD skills testing are often not applicable for persons with Down syndrome simply because of learning differences.
  • Communication skills of persons with Downs syndrome may affect the results of assessment testing.

Families need to watch for signs of AD, especially as their loved one reaches middle age years.  Diagnosis is important, but also education, resources, and support are especially critical for care partners.  Learning to better respond to surprising new behaviors will prepare families for AD symptoms, such as changes in judgment,  processing speed, memory recall, to name a few.

Care partners, either family or professionals, need to have access to new communication tools, understand that care processes will need to be adjusted as well as home or residential changes to their living environment.  Staff and family training will help care partners better serve their residents and loved ones.

Person-centered care approaches to help persons with Down’s syndrome who have developed AD is key to maintaining a loving, trusting environment, where they feel loved, valued and are treated as individuals.

Pam Brandon is President and Founder of AGE-u-cate® Training Institute and a passionate advocate for culture change, improving the quality of life of aging adults, and transformative training for professional and family care partners.  She is the creator of the internationally recognized Dementia Live® simulation experience and collaborated with expert Ann Catlin on the transformational Compassionate Touch® training.  




Understanding Frontotemporal Dementia (FTD) Differences from AD

Although Frontotemporal Dementia (FTD) is largely misunderstood, it is the most common form of dementia for people under age 60.

Originally known as Pick’s Disease and often referred to as such, FTD describes a clinical syndrome and a group of brain disorders associated with shrinking of the frontal and temporal anterior lobes of the brain.  Frontotemporal Dementia differs from Alzheimer’s Disease in two distinct categories:  1) drastic changes in behavior, which will be described below and 2) problem with language 3) genetic component and 4) age at onset.

Behaviors associated with FTD can be either impulsive or bored and listless, and often is associated with inappropriate social behavior.  Some of these may include lack of social filtering or tact; decreased empathy toward others; increased interest in sex;  unexplained agitation;  neglect for personal hygiene; compulsive and often bizarre behavior or sudden changes in food preferences.

Problems with language may include difficulty in forming words and sentences and understanding other’s speech.  Important to note is that spatial skills and memory remain intact, which is a major differentiator from Alzheimer’s disease.

Familial FTD occurs when multiple people in a family across back-to-back generations have FTD or a related condition. The multiple people are usually closely related to each other, like a grandparent, parent and adult child, and they all belong to one side of the family or the other, not both.  This is known as genetic FTD.  About 10% – 20% of all cases of FTD is considered genetic FTD.

FTD typically strikes at a younger age.  The majority of FTD cases occur between the ages of 45 and 64.  In contrast, the average age of diagnosis of Alzheimer’s Disease (AD) is 80.  The impact on work, family, and financial burdens are significantly greater with FTD than AD.

FTD is frequently misdiagnosed as AD, depression, Parkinson’s Disease or a psychiatric condition, making it far less known and understood by the medical community.  As of 2011, there were approximately 60,000 cases of FTD in the US, so it is far less common than AD.  It currently takes 3.6 years to obtain an accurate diagnosis of FTD due to the complexity of symptoms.

Caring for someone with FTD is extremely challenging.  Care partners must be diligent in finding health care professionals who will help in diagnosis, coordinating care.  Like AD caregivers, understanding the disease is paramount.  Learning patient advocacy will offer a tremendous benefit to both care partners in dealing with the day to day changes that often occur and working with the professional care team on medication management and care provisions.

Because it is difficult to diagnose, care partners should be prepared for multiple specialist visits.  Keeping a detailed journal of behaviors will aid in helping doctors look at all the symptoms that the person is exhibiting, not just what they observe in an office visit.

Keeping a healthcare notebook will be a tremendous asset in helping manage doctor visits, medications, and recording patterns of behavior.

Care partners should seek a support group early on, as FTD, like AD, is especially stressful on care partners.  The Association for Frontotemporal Degeneration(AFTD) is an excellent resource of information, publications, a listing of local support groups and more.  Their number is 866-507-7222 or http://www.theaftd.org.

Care partners need to be educated early on in understanding care services, such as In-home care, adult day and residential care.  Finding the right care for each stage of the disease will help families plan for next steps.

Today, there is no cure for FTD and there are no current treatments to slow or stop the progression, but a growing number of interventions – not limited to medications – can help manage FTD symptoms.  It is imperative that FTD be diagnosed and treated by a healthcare professional who has clinical practice with Frontotemporal Dementia.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally acclaimed Dementia Live® Simulation and Awareness training program.


A tribute to Dad this Father’s Day – Love, Hope and Lessons Learned

It’s hard to believe that I’ve not had my dad in my life for over 20 years now.  So much of who I am and what I’ve taught to my children came from my dad.  So, it’s appropriate that this blog be a tribute to my dad this Father’s Day.

My dad grew up during the great depression.  He had a difficult childhood filled with chaos and insecurity.  That said, he grew up fast and started working hard at a  young age to help support his family.   I never knew a lot about my father’s life, which told me that it was most likely far more difficult than I ever imagined.

Dad and Mom married and like so many from the greatest generation,  worked hard, saved and wanted more for their children than what they had.  They were partners in life and business and got through the tough times with perseverance and grit.  I grew understanding the value of money and its proper place, frugality and what made life meaningful and important.  Dad treasured his family, valued his many friends, and gave back to his community.  There was never a time in my life when my parents weren’t involved in community organizations that made the world a better place for those around them.

As the youngest of five children, my parents were older than average when I came along, so I journeyed with them in their aging years as a young mother.   At 6’4″, Dad was always larger than life.  A successful entrepreneur,  he was wise in business, a respected leader and certainly a quick-wit with friends and family.  He was from a generation when Dads weren’t overly involved in their children’s lives, nor particularly affectionate, but that was true of my time, so it was pretty normal.

Dad could fix just about anything.  After all, he was the owner of a hardware store.  Rarely if ever did we have the need for plumbers or handyman services.  We had Dad, and if he couldn’t fix it, who could?

Tiny changes starting happening.

One day, I was talking to Mom and she mentioned that Dad had a hard time installing some new blinds.  She said he had all the parts on the table and just couldn’t figure out what to do first.  At the time it really didn’t occur to me that it was anything more than things taking longer to accomplish because he was older.   For goodness sakes, I was in my twenties.  I really wasn’t tuned in to all this aging stuff!

Like so many spouses, she didn’t want to alarm the children.  Although Mom had seen these same changes with her own mother, there was a sense of denial that she was getting quite used to.  So months turned into years, and with each one passing, Dad became less the person we knew.  They didn’t travel anymore like they had enjoyed for so many years;  mom often would drive, and too often we would note that Dad had a far-away look in his eyes.

When Dad was finally diagnosed with Alzheimer’s disease, Mom, was exhausted, frightened and living life on a roller coaster.  Alzheimer’s had robbed the love of her life, our Dad and was taking its toll on our precious Mom.   Decisions had to be made and with that, family dynamics began to change.   It was a very tough road with many winding turns along the way.

Dad lived his last months in a memory care community.  It was much different than the care communities are now.  I’m pretty sure the culture change had not even been invented.  Quality of care just wasn’t there, but we had little to compare it to.  There just were not that many memory care communities and we chose one that was nice and close, so Mom wouldn’t have to drive that far.   We weren’t particularly happy with the care, but I can’t say that we knew what to expect.  Twenty years ago there just wasn’t a lot of education for families, and memory care was something foreign to us.   Dad was very sad.  So sad, that just a few months later he passed away.  Mom was ridden with guilt, but by this time her own health was declining so rapidly, that there was no possible way for her to care of Dad.  It certainly wasn’t what either of them (or any of us) had envisioned for the latter years of his life, but we got through it and learned many things along the way,

I’ve learned that we have the opportunity to love others in new ways.  We used to call Dad our “hot-headed Italian”.  Not the most patient man on the face of the earth,  he also had a difficult time showing emotions, especially with his daughters.  I found it especially touching that in his latter months, I could sit with him and he would embrace my hands and tell me many times how he loved me.  I never doubted that my whole life, but having us being able to share those moments will always stay with me.  We didn’t have to say much, during those visits.  Just being together was a gift to us both.

While Alzheimer’s robbed him and us in so many ways,  he lived until his 84th year.  He always said his life began when he married my Mom.  It was a good life, and they were very blessed in so many ways, none of which they ever took for granted.   I was blessed to have a Dad that taught me so much about life, and in the end, so much about death,  and accepting that life is far from perfect, but that love is what matters.  That we often can’t choose our path but do the best with what we have.

Happy Father’s Day, Dad and thank you for your love and all you taught me.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.  Pam has devoted the last 10 years to helping family and professional caregivers.  She is the creator of the Dementia Live® sensitivity awareness program that has helped tens of thousands of caregivers worldwide to better understand life with dementia.  



Considering Retirement? This Might Change Your Mind

I wonder if “retirement” will be one of those words that get’s shelved as such a “twenty-tens” thing.  Why the buzz about nixing retirement?

A study of nearly half a million people in France found that people who delay retirement have less risk of developing Alzheimer’s disease or other types of dementia.  It is the largest study done thus far and backs up the theory about brainpower and the benefits of staying mentally (and physically) sharp.  Researchers agree with the findings that working tends to keep people physically active, socially connected and mentally challenged.  All of these things are known to help prevent cognitive decline.

“For each additional year of work, the risk of getting dementia is reduced by 3.2 percent,” said Carole Dufouil, a scientist as INSERM, the French government’s health research agency.

Are we turning the tide on what old age means and when society determines we’re used up?  I certainly hope so!  Famous people such as actress Betty White (95) and Warren Buffett (87) haven’t given up their day jobs, and neither have any intention of doing so!

104 year old Fauja Singh recently ran the UK based Mumbai Marathon and is to date the oldest running marathon runner in the world.  He took up the sport at the spry age of 81!

Certainly we are seeing the tide change, as our health care and  retirement systems reevaluate the worldwide longevity revolution.  Living 30, 40 or more years in “retirement” is neither financially feasible or healthy for many many people,  and it’s stretching federal and state budgets in ways that no one dreamed of decades ago.

So before gazing into your crystal ball and seeking that dreamy “retirement” you would be wise to consider what work brings you in keeping mentally, physically, emotionally and spiritually young.  If, after examining your decision, you opt for retirement,  have a plan of filling your days with meaningful activities that are healthy for mind, body and soul.   Follow the advise of professionals on healthy aging:

  • Stay active. Many studies show exercise reduces dementia risk.
  • Stay connected — join a club, travel, volunteer. Social ties boost brain health.
  • Eat right. High cholesterol may contribute to stroke and brain cell damage, while dark vegetables and fruits may help protect brain cells.
  • Do mentally challenging activities such as word puzzles and other things that stimulate thinking skills.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.