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Music only. Course # ID‐2017‐014 1 An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Music only.
Course # ID‐2017‐014 1
An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
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 pre‐test and post‐test.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
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.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Hello and welcome to the third webcast in the four part series – An Overview of Dementia Capable Care.
My name is Robin Levine 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 third webcast, we will be focusing on a critical role for caregivers supporting a person with Dementia and Intellectual Disabilities – the Health Care Advocate.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
As a reminder, 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. Use of this training material is only authorized to trainers affiliated with NTG.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The webcast series is divided into four parts.
Part 1 was an introduction to some basic concepts and misconceptions around aging.
Part 2 focused on 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 Disabilities – the Health Care Advocate, will be the focus.
And 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.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Building on the information provided in Parts 1 and 2 of this series, this webcast will describe the important role and responsibilities of the Health Care Advocate and provide tools and strategies for you to use in supporting someone with ID and Dementia.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
So what does it mean to be a Health Care Advocate? Let’s first set this discussion in an experience that many of you may have had in your life. Think about a time when you were sick and someone came with you to a doctor’s appointment. Or think about a time someone you cared for was sick and you were their support. What was provided to you or what support were you able to give? Why was it important for you to have that support or for you to be that support for someone else?
Consider the question on the screen and check all the answers that applied in your situation? Click submit when you’re ready.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
It is likely that many of you selected all of the responses available on the previous slide; and that makes sense.
Now think about someone who has an intellectual disability and dementia. Can you see the same value in this role for people you support?
Most of us are not health care practitioners. We are not making a diagnosis or recommending treatment. What we can do is make sure that the health care practitioner has the best information possible within the short amount of time of each visit. This is the role of the Health Care Advocate.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Being a health care advocate is a vital role. So, let’s define this term so we all have a shared understanding of what we mean.
A Health Care Advocate – is a person who is not a health care professional, but can assist a patient in obtaining high‐quality health care.An advocate may be a direct service provider, supports coordinator, agency nurse, family member, or a friend of the patient.
But really anyone can be a health care advocate. Well, that is anyone who knows the person well. The Health Care Advocate should have knowledge of the person’s daily life, medical conditions, care history, and observations of other people who know the individual well and see them often. The Health Care Advocate should also have ready access to what other people know; perhaps through records or team meetings.
Remember that the process to discover what else may be causing the symptoms or change in functioning is called the differential diagnosis. We want to work with health care professionals to make sure that other treatable conditions are identified and treated first. The major function of the Health Care Advocate is to provide information to the health care professionals (doctors, nurses and other clinicians) so that they can rule out other possible causes before making the differential diagnosis of dementia.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
LEFT BOX (blue) What we are talking about is making a difference in both physical health and quality of life. If dementia is suspected or present, finding causes will lead to potential treatments as well as supports that promote optimal health and quality of life.
MIDDLE BOX (green)Health care advocates provide information; we do not make a diagnosis or recommend treatment. This information, though, is critical to assist clinicians and practitioners so they can base decisions on current accurate information.
And, who are the experts? Experts are the people who have everyday knowledge of the person’s abilities and changes. Often, they are people who have known the person for a long time, over the person’s lifespan. Experts can describe: who the person is NOW compared to who they used to be and can describe what a baseline is for the person – in order to measure future changes.
RIGHT BOX (red)There is no approach that always works for every person; information continues to change and the story unfolds over time. At the core, this is a person‐centered approach. In Part 4 of this series, we will describe how person centered thinking tools can help to discover information and determine next steps for a person with ID and dementia.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Health Care Advocacy and the role of medical clinicians who diagnose and recommend treatment are separate roles.
The role of the Health Care Advocate is to support the person to fill in the gaps and supply information that will be helpful to clinicians in forming an accurate diagnosis and recommending treatment options.
Health care advocacy helps to shape and prioritize the health care plan.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
These are the four steps to health care advocacy:1. Observe changes2. Report; document changes3. Prepare information for discussion with clinicians and 4. Follow up on recommendations
These steps represent the flow or the sequence of health care advocacy ‐ observation, reporting, preparation for meetings and appointments, and then ensuring follow up. This is a very familiar process to professionals in the human service systems that provide support to other people.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The first function of a Health Care Advocate is to identify changes to guide practitioners in diagnostics and treatments, supports or interventions needed.
Often when we think about changes we think about declines or challenges. Keep in mind though that changes can also be positive – someone who becomes more easy‐going who used to be irritable; for example. It is any change from what would be considered normal aging for that person. Normal aging is becoming more of who you are and have been over your lifetime.
Remember that behavior is communication and the details of changes in behavior provide important clues to the clinician. Everyone expresses wants and needs through behavior in addition to words. And for people with an intellectually disability who do not communicate using words, understanding communication expressed through behavior is essential.
The clinician is using your observations to inform their differential diagnosis. The practitioner’s job is to assess ‐ what other medical conditions can cause these changes? For example ‐medication side effects, cardiovascular disease, depression, stroke, Lyme disease, or urinary tract infections.
The question to be asked is ‐ what are the observed CHANGES over TIME?
We are considering: abilities; routine; relationships; level of activity; physical changes (for example ‐weight gain or loss, changes to sleep habits and/or personal toileting routines).
Dementia is a brain based disease. Senses are physiologically affected by dementia and caregivers should remember to observe changes in how people interact with their environments based on ALL senses. Part 4 of this webcast will describe how all senses are impacted by dementia.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The second function of a Health Care Advocate is to make sure changes are written down and accurately describe what has been observed.
We should not rely on memory nor risk the chance that someone else may not have this information to carry forward because it was not recorded. Accurate facts and observations without interpretation or assigning emotions give the practitioners the best information from which to make their decisions.
How the information is reported depends on who is making the observations.
Friends, family, neighbors and people in the community may use informal methods but the Health Care Advocate may be the person to record these observations.
Organizations may require specific methods, forms and processes.
The observations should be written in plain English so anyone can understanding the meaning. Important details should include: ‐Who was there‐When did it happen‐Where did it happen‐What happened before and after‐ How often it is happening and‐ How long has it been happening
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Preparing for the appointment is the third function of the Health Care Advocate. Typically, inour system, this would be done through a team meeting.
The team process helps the Health Care Advocate prepare by:
‐ Comparing behavior and changes across the person’s life (for example ‐ during the day, at home, or in the community; giving the entire team an opportunity for input)‐ Prioritizing which are the symptoms and concerns that most bother the person and caregivers and ‐ Organizing thoughts and concerns ahead of time; perhaps through a checklist.
A caregiver who provides information may not be the Health Care Advocate who is going on the appointment with the person. This highlights again the importance of information that is written clearly and concisely.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The last step in Health Care Advocacy is follow up. The goal is to make sure that everyone has a shared understanding of the recommendations. And naturally, the best way to assure this shared understanding is to write it down.
So after an appointment with a health care practitioner, be sure that:‐ Everyone is aware of the recommendations, understands next steps, actions needed, and who is responsible‐ New questions are identified and shared with the team and documented for future discussion and ‐ Everyone understands their role in taking next steps
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Like all advocacy, this is not a one‐time process that ends after Step 4. All team members need to continue to observe and report. Together the team commits to keep going; not to give up.
Remember that the normal aging process may bring more changes that need to be treated; separate from Dementia. And if it is Dementia, the changes will be progressive and so continual health care advocacy is essential.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Now we know who can be a Health Care Advocate and the 4‐step sequence in providing Health Care Advocacy. But before agreeing to become a Health Care Advocate, the person should ask ‐ am I comfortable and am I able to perform this important role?
Consider these characteristics in making your decision.
A Health Care Advocate is:‐ Polite ‐ Prepared and‐ Concise ‐ knowing that you probably don’t have a lot of time to convey information
A Health Care Advocate is not:‐ Deferential or‐ Quiet ‐ we can be polite and also make points directly and clearly
And above all, the Health Care Advocate commits to include the person totally (or as much as possible) in the conversation and follow up.
Be persistent, be an advocate.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Before we move on to the last section of this webcast, here is an opportunity for you to see if you already remember the sequence for the four steps of Health Care Advocacy. Click on the word select or the drop down triangle to reveal the steps and place in order. So, number one would be the first step and then follow in sequence. Click submit when you have completed the four steps.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Did you remember correctly that the four steps in Health Care Advocacy are to observe, report, prepare and follow up? That’s great.
In this next section of the webcast, I will share a screening tool that you can use to support all of the core functions of the Health Care Advocate.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
As with many diseases and illnesses, early detection is critical to proactively address signs and delay the progression of symptoms. Early detection can provide opportunities to impact the person’s quality of life and quality of care.
The Early Detection and Screen for Dementia (EDSD) was developed by NTG, the National Task Group.
EDSD is not an assessment, not a diagnostic instrument; it is an easy to use tool that establishes a person’s baseline and records changes over time.
Information can identify the need for referral for additional assessments and/or diagnostic work‐ups.
The screening tool can be completed by people who know the person; it does not require special training and it is available in multiple languages.
The link to the screening tool from the NTG website is on this slide ‐http://aadmd.org/ntg/screening
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The EDSD was designed specifically to screen for dementia – because typical assessment tools are not helpful. Using this tool reduces the likelihood for diagnostic overshadowing by helping to sort out issues so a good differential diagnosis can be made by the clinicians.
There are four sections in the EDSD:‐ Demographics‐ Health, Mental Health and Life Stressors‐Multiple Domains of Functioning and ‐ Chronic Health Conditions
Here are some overall things to know about using the Early Detection Screen for Dementia.‐ The EDSD has been validated for use with adults with developmental disabilities over age 50 and people with Down Syndrome over the age of 40.
‐ There is no special training required to use the screening tool.
‐ It is not just current information on functioning and health conditions, but how long the behavior and/or symptoms have been present and when changes occurred
‐ The tool can also be used by teams to prepare the Health Care Advocate for discussion with clinicians
It has been widely reported that doctors greatly appreciate the EDSD being completed for an annual wellness visit and given to the doctor’s office at check‐in. With most office visits not lasting more than 10 – 15 minutes, the information on the EDSD assists the clinician to focus on past year changes and what needs to be prioritized going forward. Just be prepared that you might need to take a moment to explain the tool to the clinician if this is the first time it is being used.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The EDSD is written in straightforward language so it can be used by caregivers and staff; it includes checklists with clear instructions.
The tool includes:‐ Basic information‐ Information on function and indicators of problem areas associated with dementia‐ Coincident conditions and ‐Medications and Comments
The screening tool allows contributors to say whether something has always been part of the person’s life, is new in the person’s life, or has been worsening.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The first section of the EDSD is Demographics; this is straightforward information about the person.
Ratings of health, mental health, and life stressors is the second section.
Notice that this second section asks people completing the screening tool to compare current status to one year ago. It also gives people space to write their comments about why dementia might be suspected (if not already confirmed) for the clinician reviewing the information.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
The third section of the EDSD reviews multiple areas of functioning. In this section, in addition to the areas identified on the slide, there are questions asked to record problems the person him or herself reports as well as changes observed by others.
Areas are rated as: ‐ Always been the case‐ Always, but worse‐ New symptom or‐ Does not apply
The fourth section of the EDSD captures information on medical conditions, including medications, and allows comments to be recorded about other changes.
In this section, areas are rated as: ‐ Recent condition (past year)‐ Condition diagnosed in last 5 years‐ Lifelong condition or‐ Condition not present
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
As I mentioned, anyone who knows the person well (for at least six months), can complete the EDSD. But no one person has all of the information so it is best to have several sources of information, such as: ‐ Ask the person who is being screened‐ Speak with family, friends and other staff who know the person and‐ Review medical records, program plans and personal files
When completed the EDSD should present the combined observations of everyone who has contributed. Remember that it is important not to hide or minimize problems in an effort to give a good impression about the person. It is only with accurate information that the best diagnosis, treatment, services and supports can be put into place.
One way to fully describe the person’s ability and to compliment the completion of the EDSD is to use a phone to take a short video of the person performing certain tasks. Then take a video at some later date (maybe annually) to show changes in cognition and/or abilities. This preferred, emerging practice is very powerful and let’s everyone actually see the changes that the person is experiencing over time. Taking a short video with a smart phone is easy to do. Agencies will need to develop policies and provide storage space for long‐term use. Families can consider available options for cloud storage space.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
Let’s bring together the two focus areas of this webcast – health care advocacy and the Early Detection Screening for Dementia tool.
Remember Albert who we learned about in Part 1 of the webcast? Albert was experiencing changes in his physical health, mood, interests in activity and daily routine.
For a moment, pretend that you have known Albert for a long time and have agreed to be Albert’s Health Care Advocate.
How do you think using the EDSD might have been helpful in supporting Albert? Check all that apply and click submit when you are ready.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
All but two of the responses in the quiz would have been helpful to Albert as a result of using the EDSD. Assigning staff responsibilities and use by agency staff to make a diagnosis are not the role of the Health Care Advocate nor the intended use of the screening tool.
However, the EDSD can provide important information that the Health Care Advocate can use to help the health care practitioner make the best possible diagnosis and guide the treatment plan.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
In summary, let’s review why all of this information is needed.
First and foremost, the EDSD collects information that the clinician can use to identify changes in cognitive decline or general functioning AND discover clues that can point to the cause. The objective is to differentiate between dementia related causes and other health, medical, environmental, situational or sensory issues.
In addition, the EDSD can:‐ Clearly show the scope of challenges and problems for the person and their caregivers ‐ Proactively address signs and delay the progression of symptoms through early detection‐ Indicate the need for change in services or supports‐ Confirm suspicions that behavior is changing‐ Identify potentially treatable conditions that may be present and ‐Make sure the information moves with the person in written form should there be a change in where he or she lives or spends their day
Here again on this slide is the link to the Early Detection Screen for Dementia available on the NTG website: http://aadmd.org/ntg/screening
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
This concludes Part 3 of An Overview of Dementia Capable Care for People with IntellectualDisability.
Part 4, Person Centered Approaches and Environmental Considerations 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.
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An Overview of Dementia Capable Care for People with ID Part 3 – Health Care Advocate
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.
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