Dementia & the Intellectually Disabled on Alzheimer’s Speaks Radio

Dementia & the Intellectually Disabled

on Alzheimer’s Speaks Radio

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Kathryn Pears
Mary Hogan and her brother Bill

Dementia & the Intellectually Disabled

Today’s Guests are Kathryn G. Pears, MPPM with Dementia Care Strategies, Inc. and Mary Hogan whose brother had Down’s syndrome and Alzheimer’s disease and is an advocate for change.  Their insights are fascinating and their education is highly needed.  In addition, Rick Phelps, Founder of Memory People also joins us.

Here is a sampling of some of the key points Kathryn and Mary cover:

  • Defining ID and DS
  • Why proper diagnosis is important
  • Why is it important to establishing a baseline and recording medical history
  • What constitutes a behavior
  • Sleep cycles
  • Quality of life issues as we age
  • How do individuals with dementia perceive the world differently
  • Why non-pharmacological interventions should be tried first.
  • Hospice and palliative care for those that are intellectually disabled
  • Support systems for families

Below are some great resources for you.  In addition, Mary Hogan has several PDF’s which I can’t download here, but feel free to contact Mary Hogan. Kathryn can be reached at Dementia Care Strategies listed below.


Caregiver Blog:

National Down Syndrome Congress- They have a great newsletter you can sign up for

1370 Center Drive, Suite 102

Atlanta, Georgia 30338



1-800-232-NDSC (6372)

Down’s Syndrome Scotland


Alzheimer’s Associations or


Sibling Leadership Network

Sibling Support Project

National Task Group on

Intellectual Disabilities Dementia Practices

Information on formal protocol for recording baseline behavior information for persons with Down syndrome.

Down Syndrome and Alzheimer’s disease (Alzheimer’s Australia) There are lots of helpful articles with tips and tools 

Helpful resources for Early Onset.

Opportunities for formal assessment of communication, memory and thinking may be limited. However, a simple, but very helpful, thing you can do is to begin collecting and dating information as early as possible (i.e. throughout adolescence and early adulthood). This information can inform clinicians about someone’s abilities before there were any signs of change in abilities.

Here are some ideas.

• Collect and date examples of writing, drawings, paintings and any other art and craft.

• Keep an annual record of: > The person’s ability to complete chores or other responsibilities at home; > Involvement in hobbies and recreational activities; > Work activities of all types (paid, voluntary); > Routines; and > Personality and behavior.

The more detailed the description the more useful it will be in the future.

• Take photographs and video tapes of the person involved in daily activities such as: Preparing a cup of tea or coffee or a simple meal; Putting on clothes, especially doing up buttons and shoelaces; Playing sports or a game; and Engaging in 10-20 minutes of conversation or interaction with a family member, friend or other familiar person.

Screening Tools:

Dementia Screening Questionnaire for IDD (DSQ ID/D)

Adaptive Behavior Dementia Questionnaire with Burt Addendum (ABDQ)

Plymouth Dementia Screening Checklist

Assessment for Adults with Developmental Disabilities

The National Task Group on Intellectual Disabilities and Dementia Practices is currently planning to field test a Dementia Screening Tool referred to as DST/NTG.

National Plan on Dementia and Adults with Intellectual Disabilities
The National Task Group on Intellectual Disabilities and Dementia Practices recently issued a plan for improving the community care of adults with intellectual disabilities affected by dementia.  The Group’s report, My Thinker’s Not Working’: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports, summarizes and addresses some of the challenges facing the nation due to the increasing rate of dementia found in older people with intellectual disabilities.  The report offers recommendations for the improvement of services and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer’s Research, Care, and Services — under the National Alzheimer’s Project Act.

To read the entire press release, go to


National Task Group report working definition of Intellectual disability:

In this report, the National Task Group has adopted a practical definition[1] that characterizes adults with an intellectual disability (formally termed ‘mental retardation’) affected by dementia as those who:

● have intellectual limitations that significantly limit the person’s ability to successfully participate in normal day-to-day activities such as self-care, communication, work, or going to school, and

● developed the intellectual limitation during the ‘developmental period’ (before approximately age 22), and

● the limitation is anticipated to result in long term adaptive or functional support needs, and/or

● are eligible for State or Federal public support programs because they have been diagnosed as having an intellectual disability; and There are many causes of intellectual disabilities, some genetic, some hereditary, and some social or environmental. Among the genetic causes, Down syndrome is the one most commonly associated with dementia as adults with Down syndrome are at high risk of Alzheimer’s disease and generally manifest early onset of dementia.

ary Hogan and her brother Bill

Rick Phelps introduces his Skype Support Groups.

He will share more details on this concept on our show on March 15th on the second half of the segment.

4 Replies to “Dementia & the Intellectually Disabled on Alzheimer’s Speaks Radio”

  1. It is time for the public to be told the truth:

    Alzheimer’s Disease (AD) and sporadic Creutzfeldt Jakob Disease (sCJD)
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    equipment, (scopes, etc.) dental and eye equipment, blood, urine, feces,
    saliva, mucous Doctors
    frequently misdiagnose AD and sCJD one for the other. The symptoms and
    neuropathology are almost identical.

    As of 2012, over 6 million AD victims in US.

    October 2011: Dr. Claudio Soto, U/TX
    announced injecting Alzheimer’s brain material into mice brains caused infectious prion disease.
    Dr. Soto – video: Alzheimer’s disease and prions:

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