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For Adults with IDD and Dementia, Maintain a Regular Daily Routine

[This is Part 3 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 communication tips for caregivers who work with adults living with IDD and dementia. This part focuses on how to deal with behavioral symptoms of dementia.]

When it comes to caring for adults living with intellectual and developmental disabilities (IDD) plus dementia, the importance of maintaining a daily routine cannot be underestimated. 

A guide from the Administration for Community Living tells the story of a respite worker who was helping care for a 58-year-old man with Down syndrome and dementia. During each visit, she would try to help him out of bed and get dressed. But he would become upset, refuse to get out of bed, and yell at her to go away. 

His mother reported that on the days the respite caregiver was not there, she had no trouble helping the individual get out of bed. When the respite worker asked the mother about her routine, she learned that the mother would play a wind-up music box on her son’s dresser before he woke. 

She would also hum or sing softly with the music as he woke up. Then she would talk about the day ahead and the weather. When the respite worker tried this same routine the next morning, she was able to help him get out of bed. For once, he did not get upset with her and he did not refuse to get out of bed. 

The takeaway? Don’t forget that family members can be resources. It made all the difference to ask the mother what worked for her. By replicating the mother’s routine, the respite worker succeeded in learning from the mother and increasing the man’s level of comfort with getting out of bed and getting dressed with the respite worker’s help.

Promoting structure and consistency can be a useful strategy for minimizing or managing the behavioral changes in adults with IDD living with dementia.  

Here are a few tips to reduce behavioral symptoms in people living with IDD and dementia:

  • Anticipate what the person will need based on what you know about their daily routine, family members, likes and dislikes, and any significant or traumatic life events.
  • Maintain as regular a routine as possible. This applies to the person’s sleep/waking schedule, mealtimes, and daily personal care activities.
  • Be on the lookout so you can recognize any discomfort or if they look uneasy. Is the person hungry or cold? Does he need to use the bathroom or have another physical need? 
  • Watch for and try to resolve signs of boredom, fear, uncertainty, or fatigue. Irritability, fidgeting, or pacing might tip you off that something is awry.
  • Select meaningful activities that reinforce a person’s sense of identity and purpose.

Learn more:

Dementia Evaluation and Care in Adults with IDD

IDD and Dementia Strategy Guide
Alzheimer’s Association: Stages and Behaviors

 

Philly Area Resources to Help Adults with IDD Find a Job and Succeed at Work  

A job can be a great way to make meaningful community connections and build one’s independence. Nothing reinforces one’s sense of self-worth and pride like a regular paycheck. A job can also give a person new skills, a place to make new friends, and interact with a mix of different people.

While it can be trickier to find a job for adults with intellectual and developmental disabilities, there are resources in the Philly area—if you know where to look. Here’s a sampling of organizations that offer employment services and resources for people with IDD who want to work or gain new skills. The level of support varies, with some organizations offer not only help with job finding or placement, but also job skills training and ongoing coaching to help new employees acclimate and adapt to workplace expectations.

Community Integrated Services is on a mission to empower people with disabilities through individualized employment opportunities that foster self-sustainability, equality, and community. Partnerships with area businesses and organizations keep CIS in the loop, enabling it to find jobs for their clients. 

Besides job coaching and long-term support to ensure success on the job, CIS connects clients with job discovery options. This can involve exploring careers through discovery, assessment, and real work experiences at companies in the community.

Since 1991, CIS has placed thousands of people in jobs. Clients have gotten jobs at a wide range of organizations, including Wawa, Olive Garden, the City of Philadelphia, and a manufacturing plant.

SpArc Services is a part of the SpArc Philadelphia family of organizations, a nonprofit that educates the community about inclusion and independence for all people with disabilities. It offers a range of employment programs that meet individuals wherever they are. SpArc serves adults ages 18 and older, offering job skills training, job placement, and job coaching. 

To ensure a good job fit, staff members meet with the individual to develop an employment plan that matches skills and interests with potential job choices. Staff work to ensure that the level of support and job match are ideal. On-the-job coaching is available to ensure the new employee succeeds in the new job as long as the extra support is needed.

Through a partnership, SpArc also helps individuals get jobs at area PennDOT Driver’s License Centers. Job options include photo license technician or janitorial staff openings. The jobs are open to people of all abilities and offer flexible work schedules. 

PATH’s (People Acting to Help, Inc.) mission is designed to help individuals achieve a more independent and fulfilling life. They specialize in helping adults with intellectual disabilities get the vocational support and training they need, whether they’re ready for a job or not. Its signature offerings are the Vocational Habilitation program and Community Integrated Employment Services.

For those who are not yet ready or do not wish to work at a job in the community, PATH offers the Vocational Habilitation program to teach adults with IDD vocational skills. Once the individual is comfortable enough, he or she can work with employment services staff to get a job in the community.

At PATH’s Keystone Street location in Northeast Philadelphia, adults may work on tasks such as hand and machine assembly, heat sealing and shrink wrapping, drilling, gluing, sorting, packaging, labeling, and occasional clerical jobs. 

Professional staff will also help adults with IDD develop their social skills so that they can work collaboratively with others on the job in future work settings. The workplace environment is modeled after factory settings of area manufacturers. The service is licensed by Pennsylvania’s Department of Public Welfare/Office of Developmental Programs.

PATH’s Community Integrated Employment Service helps adults with intellectual disabilities or adults with behavioral health disorders become as independent as possible by helping them find and keep a job.

A professional job coach will help with logistics, review newspapers, websites, and other job sources, help prepare the resume for prospective employers, and accompany the person on job interviews. Not only will the job coach work with the new employee at the job site to ensure the first days on the job go smoothly, she will work with the new employee until he or she is comfortable on the job and can do the job independently. Initial meetings and job planning meetings take place at PATH’s Frankford Avenue location in Northeast Philly.

Programs Employing People (PEP) is a Philadelphia-based nonprofit that helps match employers with reliable, well-trained workers from PEP through its Community Integrated Employment (CIE) program. With PEP’s guidance, individuals have worked at locations such as the Wells Fargo Center, Rittenhouse Claridge Apartments, Wal-Mart, McDonald’s, CareerLink, and other state agency offices and private businesses. PEP’s program helps individuals with intellectual disabilities achieve workplace literacy, find work, and succeed at employment. 

After a detailed assessment process, PEP develops employment plans that give individuals a choice of employment and volunteer positions that satisfy their needs, giving them a chance to select areas of the city where they want to work and positions that offer a chance to succeed at the work they choose.

The employment plan guides PEP staff members who then explore various jobs, search the classified ads of newspapers and websites, make contacts in the community, and complete applications for jobs that are identified as potential good fits

An employment specialist coaches individuals in one-to-one session when the individual gets a job. The training ends only after the individual can independently perform all of the required duties on the job. 

To help mainstream the individual, the job coach prepares the individual for a time when she will no longer need direct support from the coach. To give the individual moral support and help them fit into the department, the job coach will encourage other employees at the job site to help guide the individual. Because the individual gets a chance to learn how to acclimate to expectations, he or she is more likely to feel like an important, valued part of the team. And he or she is more likely to stay a long time in the job. 

Community Integrated Services 

https://cisworks.org/

441 N. 5th St., Suite 101

Philadelphia, PA 19123

215-238-7411 

 

PATH

http://www.pathcenter.org
Vocational Habilitation http://www.pathcenter.org/MR/mr_vocrehab.htm
Community Integrated Employment Service http://www.pathcenter.org/MR/mr_comintemp.htm
8220 Castor Avenue
Philadelphia, PA 19152
215-728-4600

Programs Employing People (PEP)
https://pepservices.org/home-and-community-programs/services/employment-services/

1200 South Broad St.

Philadelphia, PA 19146

215-952-4278

 

SpArc Services

https://sparcservices.org/sparc_services/employment.html

2350 West Westmoreland St.

Philadelphia, PA 19140

215-229-4550

 

Learning New Skills with the Help of a Little Horse Power

Did you know that a horse could help individuals with intellectual or developmental disabilities achieve cognitive, physical, social, educational, and behavioral goals? As it turns out, horseback riding and even just interacting with a horse can be a form of physical and mental therapy.

PATH International, the Professional Association of Therapeutic Horsemanship International, defines “therapeutic riding” as an equine-assisted activity that contributes positively to the cognitive, physical, emotional, and social well-being of individuals with special needs. Its benefits are many, including in health, education, and recreation and leisure.

Around the globe, thousands of individuals with special needs are experiencing the rewards of horseback riding.

Experiencing the motion of a horse can be therapeutic. Riders with physical disabilities often experience improvements in flexibility, balance and muscle strength, in addition to non-physical therapeutic benefits. And the human-horse connection can help build trust and confidence.

At therapeutic horsemanship centers, professional staff and volunteers work closely with riders to ensure safe riding sessions. A new rider may be assisted by as many as two people who walk alongside the horse. Riding classes are generally taught by an instructor with a strong equine background and an understanding of various disabilities.

Several Philly-area programs offer different forms of therapeutic riding. Among many programs Ivy Hill Therapeutic Equestrian Center in Perkasie offers, Pieces of Freedom is specifically designed for autistic riders. It focuses on activities to improve communication skills and social interaction, sensory integration, and behavior modification. Ivy Hill also offers therapeutic community-based instruction retreats, which are non-mounted group activities for adults with physical or mental challenges.

All Riders Up in Garnet Valley serves individuals with special needs, including physical, cognitive, and emotional disabilities. After working with a horse, students with physical disabilities see improvements in balance, core muscle strength, flexibility, and posture.  

Riding horses offers many benefits. Therapeutic riding is associated with improving the physical, mental, and emotional well-being of individuals with disabilities. It can improve strength, balance, posture, and flexibility. But riding isn’t just about improving motor skills and getting better coordination.

Working with horses improves focus, concentration, relationship skills, and social interactions. And horses can help anyone develop independence and trust in oneself and others. Beyond better muscle tone and balance, riding a horse can also help a person develop more confidence and self esteem. After all, if you’re riding a horse, you’re managing to do something that most people these days haven’t experienced.

Interacting with a horse can also help individuals develop better concentration. They may feel calmer. Self awareness and focus can be enhanced through feedback from a horse. So can patience and behavioral control. Sometimes even minimally verbal autistic individuals become better at communicating after working with a horse. 

Stables offer riding options for different fees. Some offer scholarships to help families afford therapeutic riding. For example, Pegasus Riding Academy in Philly awards scholarships for therapeutic riding to clients based on financial need. Riders eligible for scholarships include disabled individuals from low- or fixed-income families, single-parent families, or families with more than one disabled family member. 

Happy trails! 

Therapeutic riding options in or near Philly:

How to Free Yourself to be a Better Caregiver

Besides the ability to creatively solve problems and defuse tension before it escalates, caregivers who work with individuals with intellectual disabilities need a certain amount of resilience to get through their work day.

Because individuals with intellectual disabilities may not have strong reasoning or social skills, they may not know how to filter out some of the thoughts that pop to mind. And that makes them fairly uninhibited about expressing their feelings when they get worked up about something or frustrated when something doesn’t go their way.

In these situations, a certain amount of resilience, patience, and flexibility can make a caregiver’s job easier. Caregivers who are able to stay calm no matter what the individual is doing will find work easier than those who are thin-skinned.

 

It’s not about you

It’s important not to take anything an individual says about you personally, says Daisy Williams, a direct care professional with Casmir Care’s Community Residential Homes. Sometimes, she has noticed that less experienced staff at places she has worked are not as easygoing or patient as other caregivers. “Their buttons are more easily pushable than mine are,” she says.

But when you don’t take things personally, it frees you to be a better caregiver, she says.

If you do take a verbal attack personally, it’s hard to use a comforting voice to pacify the person. “You have to calm yourself first and not let thoughts run through you head” about how they should know better, she says. “No, they don’t know better. They’re angry and they’re just expressing themselves, and you just happened to be right there at the time.”

 

Tomorrow is a better day

It may also help to realize that the individual might not be angry tomorrow. You might have a good day ahead with them. “So think about that,” she says. The attitude to take is: “Okay, we’re just going to get through this day and look forward to a better day tomorrow.”

As a caregiver who has been working for Casmir Care Services Inc. for eight years, Daisy has noticed that the people who stay a long time at one company have a thick skin. They tend to be the ones who are good at controlling their emotions when situations heat up. They are the ones who are able to separate the fact that the resident is just expressing himself in a way that you would if you were at home and somebody was not doing what you asked them to do.

“It helps to stay really calm, no matter what the person is doing,” she says.

 

Offer other options

And sometimes a compromise is in order. As a caregiver, you may not always be able to convince the individual to do something your way. But you can get him to understand that there are more options. For example, you might do something his way that time, but tell him, “I want to show you other ways as well.”

A lot of her job as a direct care professional with Casmir Care involves coming up with other options, Daisy says. When the individual is focused on just one thing, he may not see that there are more choices beyond the thing he is fixated on. “I show them and help them understand they can do it in many different ways and still come out with the same outcome,” she says.

For caregivers, it’s all in a day’s work.

 

Learn more:

Tips for caregivers of disabled people
Caregiver stress: Tips for taking care of yourself
7 Tips for avoiding caregiver burnout that really work

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  

Five Exercises to Help Adults with IDD Take Control of Their Life

Many people may not realize how important exercise can be to living a fuller, better life. But exercise offers many benefits to adults with intellectual and developmental disabilities (IDD). It can help them rev up their energy. It can build stamina. Getting moving can help people feel more alert and could even make them happier. 

If adults with IDD get into the habit of doing just a few exercises a day, they can improve their coordination, be more flexible, improve balance, and fall down less. Stronger muscles and a clearer mind will help them be more independent. 

As a caregiver, don’t let individuals with IDD stay parked in front of the TV. They’ll do better if you do them a favor and encourage them to get active. 

Doing so could also help reduce their risk of heart disease, hypertension, cancer, diabetes, overweight, and obesity. And you won’t need to go to a gym or hire a personal trainer to get them to exercise. In fact, adults with intellectual or developmental disabilities can take control of their lives with safe exercises at home that can be modified to fit their needs.

The following five exercises are ideal for starting a fitness routine, according to Jared Ciner, a certified personal trainer, disabilities support counselor, and founder/director of SPIRIT Fit & Health. As a disabilities support counselor, he realized that people with IDD often need adapted strategies to accomplish certain goals. In 2013, he teamed up with a Sam Smith, a personal trainer with Asperger’s syndrome, to design group health and fitness programs for teens and adults with intellectual and developmental disabilities. 

The exercises below, which we have adapted from The Arc, will help all people maximize their strength, health, and independence. Each exercise aims to improve stability, strength, and cardiovascular endurance.

    1. The Plank: Place both hands on the ground directly under your shoulders. Then extend your legs behind you and hold your midsection up with your back straight. Your hands and your feet will be the only things touching the ground. Hold this position for as long as possible. [This is a great way to strengthen your core.] Here’s the look you’re aiming for with the plank. Can you hold it a minute or longer? When you’re done, high five, if you can! 
    2. High Knees: Stand up tall with your back straight. Place your hands in front of your torso and lift one knee up to your hand. Alternate legs and try to bring your knees as high as they can go. Do this exercise for 30 to 60 seconds. [This will not only stretch your hips, legs, and back, it will also strengthen your core, improve balance, and give you good cardiovascular training to improve your stamina and weight management.] This trainer makes high knees look fun.  
    3. Arm Circles: Stand up tall and extend your arms out to the sides as far as they can go. Bring your shoulder blades back towards each other and move your arms forward in small circles for 20 to 30 seconds. Then move your arms backwards in circles for 20 to 30 seconds. See how to do arm circles. [This will strengthen muscles in your shoulders, neck, and upper back. And it will increase your upper body strength and help improve your posture.
    4. Single-leg Balance: Stand up straight, take a deep breath, and find a good center of balance. Lift one foot off the ground. Try to balance for 30 seconds. Then switch feet. If you can do both sides without tapping your elevated foot down on the ground, try this with your eyes closed. See how to do single-leg balance. [Balance is a vital life skill for all people, especially those with IDD. This exercise will keep you stable and reduce your risk of hurting yourself in a fall. If this seems too hard, you can do this balance exercise while holding onto something like a chair.]
    5. Squats: Stand up tall with your feet shoulder-width apart. Sit your butt backwards and bend your knees as if you are sitting into a chair. Keep your knees behind your toes (keep your weight on your heels, not your toes), and try to keep your back parallel to your shins. Doing this in front of a mirror or partner will help. Squat until your legs reach a 90 degree angle or until you cannot hold the proper form. Repeat 10 to 20 times. Here’s what your squats should look like. [This is a fantastic way to strengthen your core, hips, and legs.]

 

 

For more details and information on easier and harder versions of the exercises, visit The Arc.

Read more

Around Town: Fun Things to do in Philly

 

Purpose and Paycheck for an Individual at Casmir

Part of our mission here at Casmir Care Services involves helping improve the quality of life for people with intellectual or developmental disabilities. Where possible, we help individuals we care for enter the mainstream and contribute to the community in different ways.

One of the more independent individuals in our care at Casmir Community Residential Homes holds a job.  To protect her privacy, I’ll call her Gwendolyn. For her, besides the paycheck, the job offers a sense of purpose and helps connect her socially. It’s a justifiable source of pride.

Her role in Philly’s community

Since 2017, Gwendolyn has worked at Acme, the grocery store, as a bagger. When asked what she likes about her job, she says, “Going to work every day, getting out of the house.” Having a job makes her feel good, she says.  She gets to see friends at work.

Gwendolyn seems to appreciate the chance to be of service. Her favorite part of the job, she says, is cleaning bathrooms every day.

According to the Institute for Corporate Productivity, more than 3 in 4 employers surveyed ranked their employees with IDD as good or very good on work quality, motivation, engagement, integration with co-workers, dependability, and attendance. While initially leery of hiring people with IDD, many employers saw their concerns dissolve after the employees came on board and they realized how good their productivity was.

She manages her daily routine

Punctuality is important to Gwendolyn. Holding a job means she has to take responsibility for clocking in on time. To get ready for work, she likes to get up early—at 5:30 am, then she takes a shower and gets dressed in her uniform. 

To make sure she gets to work on time, she will leave the house an hour and a half to two hours before the time she is expected at work. That way, no matter what issues come up with SEPTA delays or traffic during her two-bus commute, she shows up on time without fail. Her work day stretches from 9 am to 2 pm or 3 pm. She works four days a week. But from week to week, her schedule changes.

When it comes to those schedules, Gwendolyn is super detail oriented, aware that certain days, like Sundays, the bus doesn’t run as often. And she plans around that to ensure she gets to work on time.

The benefits of inclusive employment

Every Friday is payday. She earns $9/hour, the typical rate for a bagger at Acme. And as an Acme worker, she qualifies for a discount of 10 percent off store brands and 5 percent off everything else.

Unlike some people with IDD, who have a special supervisor at work, she reports to the same person as everybody else. She thinks her boss likes her work, because he says she does a good job.

In the past, she worked at the convention center, cleaning bathrooms and collecting trash.

When Gwendolyn is not at work, she likes preparing for the next day of work, going shopping at the dollar store, and going to the movies.

She has a great work ethic,” said Rachel, a Casmir supervisor. She takes what she does with pride. She likes to do her job well. She likes to keep her bosses happy. And she doesn’t like anything to stand in her way and make her late. Here’s hoping Gwendolyn’s workplace realizes how lucky they were to hire her.

 

Learn more:

The importance of work for individuals with intellectual/developmental disabilities

Hiring people with intellectual and developmental disabilities is good for business
Resources from the U.S. Dept. of Labor on hiring people with disabilities

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.

Resources:

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

 

Tips to Make Travelling with Intellectual and/or Developmental Disabilities Easier

If travel is stressful for most of us, it can be even more traumatic for individuals with intellectual and/or developmental disabilities (IDD). Often travel involves dealing with new things—something that can be nerve-wracking for people who tend to avoid deviations from their routine. And it virtually always involves more sensory stimulation than an individual might be used to.

Yet travel offers many benefits to individuals with IDD. Besides offering a break from the daily routine and a new way to rest and relax, it can get them outdoors being more physically active. Travelers immerse themselves in new experiences, widening horizons and creating memories they can revisit for years to come. Travel can also enhance a person’s health and well-being by helping them grow through safe experiences that expand their comfort zone.

Perhaps the most important tip I can offer caregivers who want to travel with an individual with IDD is to plan and prepare in advance. This may involve asking for special accommodations to simplify travel, whether by getting advance boarding or booking a hotel room that does not face a busy city avenue, for instance. That way, you can smooth the way, even as the individual encounters new experiences.

10 Tips for Travelling with Individuals with IDD

  1. Consider a dry run. Before staying in a hotel, try a night at a friend’s home first. Families that are concerned about a member with IDD’s ability to travel may wish to check out the Arc’s Wings for Autism and Wings for All initiatives. The programs give families the opportunity to practice entering the airport, obtaining boarding passes, going through security and boarding a plane. Contact the Arc to find out if your local airport offers such a program.
  2. Call ahead. Most hotels and other travel-related service providers need some time to make the necessary arrangements to accommodate people with special needs. Mention your needs at the time of reservation. And double check by calling the provider 24 to 48 hours before your arrival to confirm that proper accommodations have been made.
  3. Be specific and clear when you describe the disability. Not all service providers know the jargon of accessible travel or the medical terms for some conditions. “Give as many details as you can about what the individual can and can’t do,” says Smarter Travel, “and don’t downplay the severity of the disability.” After all, the more information you give the service provider, the better they will be able to accommodate you. 
  4. If flying, don’t forget to bring some form of identification for the individual. Check the Transportation Security Administration’s (TSA’s) list of approved forms of i.d.
  5. Know your rights. Before going through the security checkpoint at your airport, be aware of TSA’s rules for travelers with disabilities and medical conditions. See also the U.S. Department of Transportation’s Disability Resource Center.
  6. When going through security screenings, passengers with IDDs, such as Down syndrome or autism, may be screened without being separated from their traveling companions. Consult the Transportation Security Administration (TSA) officer about the best way to relieve any concerns during the screening process. The individual or caregiver may also provide the officer with the TSA notification card or other medical documentation to describe the condition.
  7. Consider using a travel agent who specializes in working with intellectually or developmentally impaired travelers. Check out the agent search database at TravelSense.org to find travel agents who fit your needs. Some travel agencies specialize in working with people with developmental disabilities. They include: Hammer TravelNew Directions Travel, Trips Inc., Search Beyond, and Sprout.
  8. Avoid connecting flights, when possible. Flying direct can save time and reduce hassle. If you must transfer to a different flight en route to your destination, allow lots of time between flights to get from the arrival gate to the departure gate. Ninety minutes or two hours should give you enough wiggle room to make it from gate to gate without having to race through the airport.
  9. Allow plenty of time for check in, getting through the security line, and transferring to your gate. Arrive at least two hours before your domestic flight. And add more buffer time, if you’re traveling at a peak traffic time in the airport. This is typically weekdays, early mornings, early afternoons, and early evenings. But weekends all year round and even Fridays during the summer can be quite busy at the airport. 
  10. Be creative. If the individual you care for has special interests, consider ways to accommodate them without venturing far afield. Travel doesn’t have to involve a plane ticket. And it doesn’t have to involve a big production. A day trip or an afternoon jaunt may be a good option. For instance, maybe the adult you care for has a passion for cars. Consider going to a local classic and antique car show. Or check out the nearest big city convention center to see when the next auto show featuring the latest models will be held. Or just head to a different new car showroom close by each month to check out what’s on the market.

More Resources:

Planning a Successful Vacation: Travelling with Adults with Developmental Disabilities

Six Simple Tips for Smooth Travel with a Disability

The ABCs of Accessible Travel (a brochure from the U.S. Department of Transportation)

Around Town: Fun Things to Do in Philly

 

For a change of pace, here are a few Philly-based recreation options that caregivers of intellectually disabled individuals should keep in mind.

Philadelphia Parks & Recreation’s Carousel House is dedicated to people with disabilities. Its year-round programming includes:

  • Trips
  • Dances
  • Bingo parties
  • Nature walks
  • Arts & crafts

Carousel House, located at Belmont Avenue and Avenue of the Republic, gives people with disabilities a chance to socialize, learn, and play. This summer, Carousel House will offer a summer sports camp for people (ages 16+) with disabilities.

National Park Service’s Access Pass is a free lifetime pass for U.S. citizens or permanent residents with permanent disabilities. The pass is your ticket to more than 2,000 federal recreation sites. Each pass covers entrance fees at national parks and national wildlife refuges.  

Explore National Park sites in the Greater Philadelphia area.

Team River Runner is a national nonprofit network that offers health and healing for disabled members of the community and others through therapeutic kayaking. The boats, gear, and instruction are free.

Instruction starts out with the basics in a calm river or heated, indoor pool. Team River Runner adapts the instructions to the needs of the individual with a goal of forming a supportive community that enjoys sharing a day of adventure out on the water.

Besides being a fun way to connect with nature and make new friends, kayaking offers people a chance to strengthen core muscles, improve flexibility and coordination, get excited, and clear their heads.

 

Creative Arts Therapy

The Kardon Center for Creative Arts Therapy at Settlement Music School offers music, art, and dance/movement therapy services to individuals with special needs at Settlement branches (Philly branches are at: 416 Queen St., 4910 Wynnefield Avenue, 3745 Clarendon Avenue, and 6128 Germantown Ave) and at other locations in our community.

Creative Arts Therapy is a form of non-verbal psychotherapy that uses the senses—specifically music, dance, and creative expression—to open new channels of communication between participants and their therapists, families, and communities. While goals for Creative Arts Therapy are tailored to each participant’s needs, benefits may include improved social skills, cognition, language, and physical skills. No previous training is needed to take part.

To learn about the specific offerings at the branches closest to you, contact Mark Bottos, Zausmer Program Director at the Kardon Center for Arts Therapy (Tel: 215.320.2625).

 

Avoid Sensory Overload

What counts as recreation varies by person. Those who experience sensory overload in many settings may prefer to drop in on a museum that offers special accommodations for them in Philly.

Some of the participating museums include:

  • The Academy of Natural Sciences of Drexel University offers Access to Science events when the museum is open to visitors on the autism spectrum. The next events will be July 14 and August 25. Pre-registration is required, but can be same-day.
  • The Franklin Institute offers tools everyday for people who typically might find it a bit loud, crowded, and bright. Sensory alert maps help guide you through experiences that may involve high levels of sensory stimulation. Sensory backpacks stocked with noise-reducing headphones, sunglasses, fidgets, and weighted toys help reduce sensory stimulation while checking out the exhibits can be borrowed first-come first-served at information desks in the atrium and lobby. Plan your visit for weekday afternoons or evenings, which are less busy.
  • The Please Touch Museum offers Play Without Boundaries days, when the museum offers a more relaxed environment for individuals with autism, learning differences, and other sensory or communication needs. Accommodations include:
    • The museum is closed to the general public, so there are fewer visitors.
    • Low-level lighting and a quieter experience.
    • Tools to enhance your visit, include quiet zones
    • The next Play Without Boundaries events will be July 7, August 4, Sept. 8, October 6, and November 3. Be sure to pre-register.

Our Vision

A leading agency providing quality, effective, person-centered, flexible and innovative services in Pennsylvania and surrounding states.

Contact Us

4950 Parkside Ave, Suite 400,
Philadelphia, Pa 19131
Phone: 267-292-3116
Fax: 267-292-4879
support@casmircares.com

About Us

Our goal is to ensure peace of mind for families and loved ones who are faced with the challenges of placing relatives in nursing homes and other treatment facilities. We offer a wide array of non-medical services tailored to the unique needs of the individuals we care for.