Tag Archives: Alzheimer’s disease

Alzheimer’s Disease: What Would Maslow Say?

Human needs remain intact regardless of age, situation, or condition.

Abraham Maslow was an American psychologist who taught that survival needs must come before social or spiritual needs. Alzheimer’s disease impacts all these needs, for instance, as in a woman named Faye.

The need for physical survival. Faye relied on caregivers to assist with physical needs. 

The need to have personal security and to feel safe.  Faye didn’t recall recent events, so she didn’t realize where she was. Memories of past experience faded.

The need for a sense of belonging and connection to others. Faye had been active in her church.  The move to a nursing home separated her from familiar people and consequently became withdrawn and anxious.

The need to express feelings and have them acknowledged.  Alzheimer’s decreases a person’s ability to express thoughts. Faye was frustrated because care-partners didn’t understand her.

The need to give to others and to be treated with respect.  We all need to feel useful. We thrive with mutual understanding and respect.  However, people with Alzheimer’s may believe they have nothing to contribute.

The need for a sense of self and a connection to spirit. Many assume that Alzheimer’s robs people of their identity.  Although memory and cognition become impaired, it appears that the person living with dementia seems to retain a sense of self—the essence of who he or she is.

In conclusion, understanding human needs may help us to be a little more empathetic with people living with Alzheimer’s disease.

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and serves as a Master Trainer and training consultant.

“Remember This” Changes the Conversation about Dementia

Dementia Friendly Fort Worth recently sponsored Remember This, a participatory performance experience by the Texas Tech University School of Theatre and Dance.  Created and produced by Dr. Tyler Davis, Genevieve Durham DeCesaro, Rachel Hirshorn-Johnston, and Dr. Annette Sobel,  Remember This is about changing the conversation about dementia.

Remember This is poignant, inspiring, humorous and creative.  

Remember This is designed to spotlight conversations about and perceptions of dementia by using a myriad of performance approaches, including dance, improv comedy, and scripted theatre taken directly from interviews with people living with and around the disease.

The creators worked to research and publicize the humanity, as opposed to solely the tragedy of the disease, by approaching it as a set of interwoven stories.  Remember This is designed to promote a larger and louder public conversation about people living with dementia as well as the communities (e.g. caregivers, families, community business owners, hospitals, etc.) who care for and serve them.

The creative ensemble that performed, several who had loved ones with dementia, was simply an amazing work of art.  Hats off to the visionaries, researchers,  and creative minds of Remember This.  Having young people share in the dialogue is expanding the generational reach of dementia.

Thank you to Dementia Friendly America, of which Dementia Friendly Fort Worth is a part of, Alzheimer’s Association and many others who are changing the conversation to the broader public about dementia – how to better understand dementia,  openly accept persons living with dementia as vital members of the community, and to help those caring for persons with dementia.  And finally, to provide more funding for training, support, resources, and research – all urgently needed to meet the fast-growing numbers of persons living with dementia and those caring for them,  in the U.S. and throughout the world.

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


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.