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Archive for September, 2019

Communication Tips for Caregivers Who Work with Adults Living with IDD and Dementia


[This is Part 2 of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 3 will explore how caregivers can respond to behavioral symptoms.]

When an individual with intellectual and developmental disabilities develops dementia, it’s important to reinforce the remaining communication abilities. Mental activity may help people keep some forms of dementia at bay. Below are techniques caregivers can use to facilitate daily communications:

  • Relax. Before interacting with a person living with IDD and dementia, caregivers and family members should let go of their own emotions by using physical relaxation techniques like deep breathing. Doing relaxing deep breathing will help the caregiver interact with the individual—who may not make sense or may behave in an irrational way—without becoming anxious, annoyed, or frustrated.
  • Be supportive and nonconfrontational. Use nonthreatening words to build trust and avoid being critical of the individual.
  • Ask simple, concrete questions. Keeping conversation simple and direct will promote communication.
  • Be patient. Allow plenty of time for responses. Talk slowly. Pause often. And repeat key phrases when speaking with an individual with IDD and dementia. His or her reaction times are likely much slower than before, pre-dementia.
  • Rephrase and paraphrase. Repeat the individual’s basic message using the same key words, tone of voice, and speech cadence. This encourages continued communication not only by giving the person a chance to hear what they said but also by giving them time to gather their thoughts. This ensures the message conveyed is understood as intended.
  • Reminisce. Encourage the person to explore and recall pleasant memories. Do not fixate on the accuracy of these memories. Simply encourage them to express themselves.
  • Use pictures and objects  to help you communicate ideas.


Create Memory Aids

To facilitate positive interactions and focus on maintaining learned information, albums or charts can be a great help. Caregivers can help individuals living with IDD and dementia create personal memory albums, which are small photo albums with easy-to-turn pages. Each page may contain photographs of a key memory on the left-hand page and a short statement about that memory on the right-hand page of a spread. 

Another option is a personal memory chart, which may involve photos and statements placed on large, laminated pieces of cardboard posted on the person’s bedroom walls. Whether the person living with IDD and dementia is able to walk or spends most of the day in a wheelchair will dictate what height is best for posting the memory chart.

What should the memories focus on? The albums and charts can address:

  • Facts that are important to the person. 
  • Information on conversation topics the person likes or wants to talk about. Ideally, caregivers identify three topics that are important to the person. They are topics from the person’s present life or from his or her past. Topics that the person often attempts to discuss can go here. Maybe he likes cats. Or she loves to tend plants and grow things. What does he care about? What does she love to do?
  • Facts that the person often gets confused

The personal memory album or chart might also include:

  1. The person’s name, age, where they worked, things they like to do
  2. Names of family members and how they are related
  3. Elements of daily life: days and times for important events. Daily and weekly events, including meals, appointments, and family visits may be included here.
  4. Names of other people in the home or others in programs they attend

Although what the individual remembers may shrink, using these techniques and memory aids can help keep the person engaged and even entertained, spending time thinking and talking about what he or she likes most.


Learn more
Alzheimer’s Dementia: What you need to know, what you need to do

Dementia Guidebook for Individuals with Developmental Disabilities and Their Caregiver

Talking About Dementia: A Guide for Families, Caregivers, and Adults with Intellectual Disability  

How to Recognize the Signs of Dementia

[This is part of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 2 focuses on caregiving tips for dealing with adults with ID who have dementia.]

The population of older adults with intellectual disabilities is growing. And so is the number with dementia. While for the broader non-ID population, memory and cognitive changes may be among the most noticeable or early signs of dementia, for adults with ID, personality and behavior changes may signal the early stages of the disease. One study found that early symptoms of dementia in people with intellectual disabilities included a general decline in functioning. As the dementia advanced, behavioral and emotional changes, including changes in mood, lower energy levels, and hallucinations, may follow. In the late stages, incontinence and difficulty walking were common. 


Kinds of dementia

Dementia is not one specific disease, but a set of symptoms that cause changes in the brain. The symptoms can be severe enough to interfere with activities of daily living. They may include memory problems, changes in personality, and impaired reasoning.

Dementia is not a normal part of aging. And some changes that occur may be due to conditions that can be corrected. Some of the most common types of dementia are:

  • Alzheimer’s disease: This affects more than 60 percent of people diagnosed with dementia. Symptoms include memory loss, confusion, communication problems, anxiousness, and sometimes paranoia.
  • Vascular dementia: This is the second most common type of dementia. It can occur post-stroke. Symptoms include memory loss, impaired judgment, loss of motivation, and a decreased ability to plan.
  • Frontotemporal dementia: This less common type of dementia is associated more with behavioral and emotional changes than with memory or cognitive declines. There may be an increase in inappropriate behaviors, apathy, decreased empathy, compulsive behaviors, anxiety, and depression.


Signs and symptoms of dementia

People with dementia may exhibit some of the following signs or symptoms:

  • Unexpected memory loss
  • Difficulty doing usual tasks
  • Getting lost or misdirected
  • Confusion in familiar situations
  • New seizures
  • Personality changes
  • Problems with gait or walking
  • Language difficulties

It should be noted that while intellectual disabilities involve undeveloped or underdeveloped mental or intellectual skills and abilities, dementia involves the widespread loss of mental or intellectual skills and abilities. While the behavioral presentation is similar, a loss from the previous level of function differentiates the two.


What to look for

Memory changes in dementia might look like this:

  • Word finding difficulties: A person may ask for items by function, not name.
  • A reduced ability to hold a conversation.
  • A loss of interest in social activities or earlier hobbies.
  • Inappropriate behavior.

Some functional capabilities may change as well:

  • A person may lose skills in an area where he or she used to function well.
  • A person may take longer to respond during a conversation and to situations.
  • Personality changes may lead to depression.
  • The person may not be able to find favorite objects/clothes.
  • The person may become easily upset, confused, or short-tempered.

More severe changes can include becoming paranoid or distrustful of familiar places or activities, sudden mood changes, explosive emotions, a higher level of disorganization or frustration, and losing language skills. In the realm of self-care, more severe changes might involve trouble with balance, loss of bowel and bladder control, a poor appetite and swallowing problems, and/or sleeping most of the time.

Some examples that families have cited that raised parental or caregiver concerns about dementia include: falling, difficulty eating, no longer talking, increased aggression, throwing oneself on the floor, undressing inappropriately, difficulty getting out of bed, becoming disinterested in activities, medical problems (including seizures), and other problems (trying to make guests leave the house).

It can be tricky to diagnose dementia in an individual with an intellectual disability. Individuals with developmental disabilities may not be able to report signs and symptoms. Subtle changes may be hard to catch. Many dementia assessment tools may not work on people with IDD. And it can sometimes be hard for caregivers to communicate what has changed to a healthcare provider. 

Conditions associated with a developmental disability may be mistaken for signs of dementia. And it can be hard to measure change from a previous level of functioning. Because pre-existing intellectual and psychosocial deficits can make it hard to detect memory loss and cognitive changes that may have occurred, evidence of a decline will depend on being able to compare current vs. earlier levels of functioning.


Tip: Create a baseline document

Ideally, a caregiver would be able to document declines in cognitive or adaptive skills from previous levels of functioning. Use photos and video (with your smartphone) to help a doctor understand how an individual’s current level of functioning compares to baseline functioning. A doctor should be able to exclude other causes of decreased function.

To create the baseline file, the National Task Group on Intellectual Disabilities and Dementia Practices recommends that caregivers and family members save photos and videos that show what the individual with ID can do or likes to do:

  • Walking back and forth
  • Carrying on a conversation
  • Completing simple tasks (like picking up coins and putting them in a small jar)
  • And take notes on personality, emotional strengths, language skills, behavior, and health.

The more a caregiver documents, the more she will have to compare with later.

Learning more about the characteristics of dementia, plus diagnosis and care, is a great way to plan for a loved one’s care as he or she ages. Although the information can seem like a lot to take in, it can also help caregivers control the challenges they may face down the road.


Dementia and Intellectual Disabilities (a brochure from the National Task Group on Intellectual Disabilities and Dementia Practices)
Dementia Evaluation and Care in Adults with IDD


Employment Open House

Casmir Care Services Employment Open House

Direct Care Professionals and Caregivers  for Individuals with Disabilities


What:        An opportunity to learn about Casmir Care Services and the individuals we serve.

Dates and Times:      September 6 and September 13 @ 11 am,  September 17 @ 1pm 

Where:     4950 Parkside Ave., Philadelphia, PA 19131

RSVP:      Call (267) 292-3116 to sign up

Come prepared with:

  • Resume
  • Two forms of ID
  • PA State Criminal record (or $22 in cash to obtain the report) 
  • Proof of First aid and CPR
  • Physical and PPD
  • A willingness to help and to grow

Educational requirement: High School Diploma (or GED)

Click here to see the Direct Support Professional position description.





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