Music only. Course # ID 2017 012 1
This webcast includes spoken narration. To adjust the volume, use the controls at the bottom of the screen. While viewing this webcast, there is a pause and reverse button that can be used throughout the presentation. The written version of the narration appears to the right of the screen. Course # ID 2017 012 2
Certificates of Achievement will be available to Administrative Entity staff, Providers, Supports Coordinators, and SC Supervisors after completing all course requirements. Please view and then save or print your certificate in order to receive credit for this course. For SCs and SC Supervisors, course requirements include successful completion of a pretest and post test. Course # ID 2017 012 3
Hello and welcome to the first webcast in the four part series An Overview of Dementia Capable Care. My name is Frank Schweigert from The Columbus Organization, an ODP Training Partner. Along with the other presenters in this series, I am a Regional Affiliated Trainer with the National Task Group on Intellectual Disabilities and Dementia Practices. We are also Person Centered Thinking Trainers credentialed through the Learning Community for Person Centered Practices. This series of webcasts will provide resources and information that you can use to begin supporting people with intellectual disabilities who are at risk for or are experiencing the onset of dementia. In this webcast, we will be introducing basic concepts and misconceptions around aging. Course # ID 2017 012 4
Whether you are a family member, Direct Support Professional, Supports Coordinator or anyone else providing support, this quote from Dr. Seuss reminds us that no matter how big or small, our contributions can have a significant impact on the quality of life for the people we support. Course # ID 2017 012 5
The webcast series is divided into four parts. This webcast is Part 1 and will be an introduction to some basic concepts and misconceptions around aging. Part 2 will focus on the what is meant by Dementia Capable Care and the importance of a Differential Diagnosis In Part 3 a critical role for caregivers supporting a person with Dementia and intellectual disability the Health Care Advocate, will be the focus. This series will conclude with Part 4, where we will explore the connections to Person Centered Thinking and offer some environmental considerations when supporting a person with dementia. Course # ID 2017 012 6
By the end of this webcast participants will be able to: describe how aging can impact each of us differently. define what is meant by the term healthy aging. identify at least two factors that can impact healthy aging. identify at least two risks and two challenges to healthy aging for adults with an intellectual disability. Before we go further, a little background about the National Task Group on Intellectual Disabilities and Dementia Practices or NTG, and the content of this webcast. Course # ID 2017 012 7
Much of the information we present today is copyrighted by the American Academy on Developmental Medicine Dentistry and the National Task Group on Intellectual Disabilities and Dementia Practices. As affiliated trainers for NTG, we are permitted to present this information to you in this webcast. Course # ID 2017 012 8
The NTG was formed in 2014 as part of the response for a national plan to address Alzheimer s Disease and Related Dementias required by the National Alzheimer s Project Act of 2011. This Act called for: Guidelines on care, supports, and education related to dementia The creation of dementia specific assessment or detection tools Enhanced dementia supports and research and A focus on specific populations, including Intellectual Disability Course # ID 2017 012 9
The NTG was formed to respond to the need for a national training curriculum specific to intellectual disability and dementia. Representatives of the NTG included national and international experts on aging, dementia and intellectual disabilities, including several experts from the Commonwealth of Pennsylvania. Course # ID 2017 012 10
The curriculum that has been developed so far by NTG consists of 17 modules, covering a variety of topics. This webcast series will provide a brief overview of a few core concepts, components and recommendations of the curriculum. Within this series, we will also identify some of the person centered tools in use in Pennsylvania that can support the provision of Dementia Capable Care for people with an intellectual disability. More in depth training on the curriculum is available from any NTG Affiliated Trainer and contact information is provided at the end of this webcast series. Now I would like to first introduce you to Albert. Course # ID 2017 012 11
Albert is a huge Buffalo Bills fan. He even held season tickets and went to almost every game with his family. He is very proud of his large extended family that he loves to visit with and talk about. Course # ID 2017 012 12
Albert seemed to be living a generally happy and healthy life until his caregivers began seeing signs of potential cognitive decline in 1996. At that time they were able to take him to a local Geriatric Assessment Clinic to figure out what was happening. While he was not diagnosed with Alzheimer s Disease at that time, the assessment process was able to identify several potential contributing factors to his apparent decline. Albert was experiencing depression as a result of recent losses of several close family members, including his mother. He was also diagnosed with a cardiac condition and a previously undiagnosed vision problem. Through the assessment process they also first learned of Albert s desire to reduce the number of days he was working. Even without a diagnosis of Alzheimer s Disease, this assessment led to Albert getting treatment for his depression, his caregivers were able to make some environmental adjustments to his home to minimize the impact of the vision issues, and they were able to modify his work schedule so he could spend Wednesdays running errands and Fridays attending the Senior Center with his aunts. Albert loved the lunches there and being able to watch movies with his aunts. And for the next 15 years Albert was able to continue to be successful in his life and do many of the things he enjoyed, including going to the Bill s football games. Does this sound like anyone you know? Course # ID 2017 012 13
Take a moment to reflect on Albert s story. What if In 1996 everyone just assumed his decline was Alzheimer's? How might Albert s life be different? Choose the answers that you think fit best with Albert s story. You can check all that apply. When you are ready, click the submit button. Course # ID 2017 012 14
Did you select all the choices? If in 1996 Albert s family, caregivers and health care practitioners had just assumed his decline was due to Alzheimer s and his depression, cardiac and vision issues, not to mention his work schedule had not been addressed, it s likely that his quality of life over the next 15 years would have been significantly less pleasing and satisfying to him. While over time Albert has had a significant loss in his functional abilities, those supporting him were much more aware of what is important to Albert and worked to provide that as best they could. In 2012, when he was formally diagnosed with Alzheimer s disease, those supporting him were now better prepared to continue to support Albert in maintaining his quality of life as much as possible. The NTG Dementia Capable Care Curriculum and this webcast is not intended for you to be able to diagnose dementia (we leave that to the health care professionals). However, the content will increase your awareness and understanding of dementia so that you can more effectively support the people you know and work with that may have an intellectual disability and are experiencing or at risk for dementia. Course # ID 2017 012 15
Before we explore the potential impacts of dementia, we need to understand some basic information about aging. From the day we are born, we begin to age. How we age is unique to each person, but as we age there are common patterns. Course # ID 2017 012 16
There are some common patterns and factors that impact how well we age. These include: Our genetics How well our parents, our siblings, and our relatives age can be an indicator of how well we might age. Is there a family history of arthritis, heart disease or dementia? If so, the risk for you having these issues as well can increase. Lifestyle Our current and life long attention to diet and exercise, as well as other habits such as smoking, can influence how well we age. Our lifestyle also includes the availability of support networks, including family and friends, that we build over our lifetime. The environments where we live, both socially and physically, can impact how well we age. If a person lives in an environment that has limited social opportunities, or in an environment that presents physical challenges, as issues of aging arise, those social opportunities, could be further decreased and previous physical challenges can become obstacles or even dangerous. Our attitude and the attitude of others towards aging can also be a factor in how well we age. Do we celebrate our birthdays or dread them? Do those around us respect the life experience of an older person or disregard them? We can t necessarily control all of these conditions, but recognizing them allows us to find ways to minimize the potential impacts when they exist. Course # ID 2017 012 17
Adopting a Lifespan Approach to aging for ourselves and the people we support recognizes that the factors from childhood to adulthood can impact healthy aging. It allows us an opportunity to make changes now that can make a larger difference later, when aging can begin to impact quality of life. Course # ID 2017 012 18
How well a person ages can be impacted by a variety of other factors as well. Use the text box on the screen to enter your ideas of some other factors. When you are ready, click the submit button. Course # ID 2017 012 19
How well a person ages can be impacted by a variety of other factors. Did you include any of the following on your list? Poor lifetime health practices if we didn t pay attention to our health in our younger years, it becomes harder and harder to change these practices as we age. For example: If a person has been overweight for a long period of time and has limited stamina when walking, as they age and their stamina decreases, they are likely to walk even less. Previous medical events or interventions, while necessary at the time, may have an impact on aging later in life. An example of this is survivors of polio. While the initial treatment of the polio was effective at the time, decades later, many of those same survivors are now experiencing progressive muscle and joint weakness and pain. This is referred to as Post polio Syndrome. Prolonged usage of medications can also impact healthy aging. As we get older, our bodies can lose their ability to effectively process the medications we are taking and we are at a higher risk for negative side effects. At the same time, as we age we are more likely to develop other chronic medical issues that can require additional medications being prescribed. Course # ID 2017 012 20
An additional factor that can impact healthy aging can be access to health services, now and in the past. For those we support, this can include access to medical services where staff are familiar with the health history, including familiarity with any potential health risks related to their intellectual disability. If the health care professional is not familiar with the person s history and the other risks related to their disability, they will find it difficult to properly track or address the progression of these conditions. As we age, we also become more susceptible to related conditions such as dementia, arthritis or cardiovascular disease. The impacts of these conditions, whether treated or untreated, in combination with the other health factors can also influence how well we age. And as mentioned earlier, the level of regular exercise and our nutritional habits can play a significant role in how well we age. The person who does not monitor their diet and rarely engages in exercise is already behind the curve. As they age they will likely see the impact of aging more quickly than the person who has engaged in even moderate regular exercise and good eating habits. Course # ID 2017 012 21
You may be asking why is this important to us? To start, Pennsylvania has the second oldest population in the nation. With the medical advancements of the past century, the lifespan of everyone, including people with an intellectual disability has increased. This increased lifespan also increased the risk for developing dementia. Albert s story is similar to the stories that can be told about many of the people with an intellectual disability that we support in Pennsylvania. Current research on dementia and intellectual disability supports the need for public and professional education to provide needed information so that risks and onset of dementia are more readily recognized. But recognizing the onset of dementia is not enough. There is also the need to adapt and improve the existing resources and supports to better allow the person to continue to live in their current home, maintain relationships and participate in their regular activities as long as possible. This is also known as aging in place. There is also a need to develop specific programs and services that can effectively support the unique needs of someone with dementia. By doing all of this we can provide what is referred to as Dementia Capable Care. We'll talk in Part 4 about specific needs for supportive settings as long term dementia progresses to mid and end stage. Course # ID 2017 012 22
So what is the level of risk for adults with an intellectual disability to develop dementia? Select from the choice on the screen how you think the risk compares to the general population. Click submit when you are ready to continue. Course # ID 2017 012 23
If you answered 0 times greater, you are correct! Dementia, in whatever form it takes, affects people with or without an intellectual disability equally. The one exception is Down Syndrome. The rates for people with Down Syndrome are roughly 5 times higher than the general population. In addition, adults with Down Syndrome age related diseases and changes can occur about 20 years earlier than the general population. However, there are some specific challenges to healthy aging for someone with an intellectual disability. Course # ID 2017 012 24
For many people with an intellectual disability their medical history, including the history of family members, is often incomplete or unknown. Turnover of support staff and health care providers can also lead to the loss of some of this information. Without this information, current service and health care providers may not fully understand what the person s capabilities were before the current service or health care provider began providing supports (their baseline). They simply assume that the current reality is the baseline. We will talk a little more about this later, but one suggestion to document the person s baseline abilities over time is to record brief cell phone videos of the person engaging in everyday tasks. These videos can create a library of examples that can be used to demonstrate the progression of the person or their illness. Course # ID 2017 012 25
Another challenge is ensuring that the person has the appropriate supports to help them advocate for their health care. Through effective health care advocacy we can better ensure that all the necessary information is provided at health care appointments in a way that is useful to the health care professional. We can also help to ensure that the people attending the health care appointments with the individual are the most knowledgeable about the person and the symptoms. We will focus more on health care advocacy in Part 3 of this webcast series. Course # ID 2017 012 26
Finally, cultural biases and beliefs can also be a challenge to supporting healthy aging. Depending on the specific cultural beliefs and values attributed to it s aging members, memory loss, personality changes and other signs, symptoms and behavioral changes can be seen as just a part of aging. When accepted as a normal part of aging, it may be done in respect for the age of the person or because the person is no longer as valued, because of their age. As a result of those beliefs, caregivers or health care providers may fail to report signs, symptoms, or changes or may simply minimize their importance. When advocating for the person it is important to helpthe health care practitioner to understand the changes and recognize the biases and beliefs that can delay or prevent accurate diagnosis, treatment, or supports. Course # ID 2017 012 27
This concludes Part 1 of An Overview of Dementia Capable Care for People with ID. Part 2, Dementia Capable Care can be found where you accessed this webcast. Please be sure to complete all four parts of this series in order to receive a certificate of achievement. Course # ID 2017 012 28
The primary content of this webcast was developed by and is the property of the National Task Group on Intellectual Disabilities & Dementia Practices (NTG). This content is copyrighted by the American Academy on Developmental Medicine Dentistry on behalf of the NTG and its use in this webcast is in compliance with NTG s fair use standards. The webcast was produced by the Pennsylvania Department of Human Services, Office of Developmental Programs in partnership with The Columbus Organization. Course # ID 2017 012 29