Viewing posts from: September 2014

Insights into Brain Function Identification: An Interview with Beth Schoenfeld

Posted on: September 29, 2014 | 0 Comments

portrait_Beth
Beth Schoenfeld is a passionate advocate for dementia education. Our Vice President and the Director of DSG’s Indiana Region, she’s been tireless in her quest to help families with loved ones suffering from dementia. Beth is an RN, MSN, CDP, CDI, and CCP -- her compassion and expertise have lead her to develop the Brain Function Identification process (BFI). BFI is a noteworthy method that enables family members to better understand and empathize with dementia sufferers, while improving the lives of the dementia patients themselves. Today, Beth is here to share some further insights into this unique strategy.
Is the Brain-Function Identification process unique to Dementia Services Group? What are its key components? It is unique to DSG.   The actual tools we utilize are not unique, but what we do with the information we gain from the instruments is what is unique.  The screening tools help us determine how to help the families and client how to best structure the environment and plan successful and engaging activities that will provide success. As an example, we have the clients perform visual scanning and visuospatial screens, including ability to interpret color contrast to determine how to modify their environment.  If they have lost depth perception or peripheral vision, caregivers and family can be trained on how to best approach the client and how to make their home safe.  Color can be used to make necessary items more visible.
It is heartbreaking to witness, but quite rewarding when you can see that the family members ‘get it’ and change THEIR behaviors.Beth Schoenfeld
What lead to the development of BFI? How does BFI differ from other diagnostic processes? The tools were developed because we found time and again that families were blaming client's for things out of their control.  It was causing angst for both the caregiver and the person with the cognitive impairment. When you can show a family member why you think that the client is not doing things to be difficult or because of a long-standing personality issue, it makes everyone's life easier. A lot of this process was developed just to help the families have a better understanding on why the person with impairment acts a certain way or has difficulties.  Much of dementia does not make intuitive sense.  People with dementia have the ability to move, but the connection from the brain to the muscles may not work consistently or correctly and therefore they can't move always on cue.  Clients with dementia may be able to respond to what is in front of them at any given time, but can no longer understand how to do something without the visual cues or an outside stimulus. Cognitive impairment is not just about memory loss -- it also affects vision (depth perception, motion interpretation, color and contrast and peripheral vision), creativity, concept formation, planning, foresight, initiation or being able to stop an activity, and motor functions.  Because dementia does not always follow a logical progression, clients can perform some activities, but not others.  Cognition is also affected by sleep, adequate stimulation, hydration and glucose levels, and exercise. Functions may be better at some times of day that others. This all plays into the family's thinking that the client is being manipulative and difficult.  It is heartbreaking to witness, but quite rewarding when you can see that the family members "get it" and change THEIR behaviors, which then causes the client to change for the better.  It is not rocket science, but it is also not intuitive and not taught in many books. Most nurses and doctors can identify dementia, but may not always be the best at helping families know why things may be happening or better yet, what to do differently.  This is why we developed this approach to care.
Just the knowledge that the client was not being difficult was a huge relief for the caregiver and the caregiver burden lessened as a result.Beth Schoenfeld
What occurs after you’ve identified a client’s brain functions? How do you adjust his or her environment or care plan? Each situation is different and the tools we use are different based on the family goals for our visit.  If a family calls us in for certain "behaviors", we may alter what we are looking for to determine environmental influences on behavior and how the client's cognitive processing may contribute to the issue at hand. Often times, it is eye opening for families who often believe their family member is being "manipulative" or "stubborn", is really acting so due to their loss of flexible or abstract thinking abilities.  When we can show the results of some of the cognitive screening tools to the family, they have the "aha" moment. Families are often upset because they feel like their loved one is being "lazy" and refusing to do things they have always done.  One of the things that can be lost is the ability to initiate, except in response to an outside stimulus.  When we can show the family that their loved one has lost this ability to initiate activities, they then know they are not lazy and can be taught how to approach the client to invite them to activities or to set up cues in their environment as reminders.
...we know that cognitive stimulation continues to be good for people, even after they have been diagnosed with a cognitive impairment. Beth Schoenfeld
How has Brain Function Identification helped some of DSG’s clients? We had a client who could remember some things (but not others) that the caregiver thought they should remember.  Therefore the family thought the client was being manipulative.  When I could show that the client had no visual, or verbal short-term memory, but could remember things that were tied to emotionally charged issues, they understood how to better structure their environment. This included wall calendars with detailed schedules, labelling of what was in a cabinet, and labelling more complicated processes (such as how to change the channel on a tv cable box).  Just the knowledge that the client was not being difficult was a huge relief for the caregiver and the caregiver burden lessened as a result. We had a client who was calling out and being vocal.  This was seen as a negative behavior as she was living in a nursing home.  It was determined that the client no longer had the ability to have abstract thinking and purposely seek out what she needed.  Because she was able to communicate, the staff assumed she would ask for what she needed, for example drinks of water.  But once we could show the facility that she no longer could purposefully ask for her needs, it made a significant difference in how her care was structured.  She was put on a toileting schedule which eliminated her incontinence, and she was offered drinks and snacks on a regular schedule.  The behavior of "calling out" stopped. My father-in-law was diagnosed over 3 years ago with Alzheimer's.  I used some of the cognitive tools for him, along with a thorough social and interest inventory, to come up with (as he calls it) "his brain therapy" that he completes every day.  He looks forward to the activities. Each was chosen to work different parts of his brain.  Some of the items include seek-and-finds to work on visual scanning, Family Feud to work on word recall, Boggle-type games to work on sequencing, and block design activities to work on visuospatial skills. Also, there are some basic problem solving workbooks and mazes to help his logic and reasoning.  He performs these activities with his home care helper, who knows to alter the types of activities offered.   He looks forward to the activities every day, and even does them some evenings and on weekends when the caregiver is not present. We know that cognitive stimulation continues to be good for people, even after they have been diagnosed with a cognitive impairment.  We can use these cognitive tools to determine what the client is still good at so that activities can be structured in ways that they enjoy and can be successful.
Thank you, Beth, for sharing your expertise with us!
 

Please Help Us Reach More Families

At DSG, we want to help even more families affected by dementia. We've applied for the Mission Main StreetSM Grant, sponsored by Chase and Google, and we need 250 votes by Oct. 16th to move to the next round.

Please help us realize our goal of changing the world of dementia care! This grant would give us the ability to help more families and change the way care is provided to those with dementia.

 

Chapter 6 – Jamie’s Journey

Posted on: September 23, 2014 | 0 Comments

Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie's Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
So, how does one go about finding an assisted living facility? (check out my post on how to find an ALF or memory care for more information).  I really didn’t know – so I did the most obvious thing and got on the internet (which is not a good way to choose something this important!).  I put in search criteria (very limited) and then got a list of facilities that met those criteria.  Great.  So I set up some appointments to tour.  Honestly, I didn’t really know what I was looking for or what was important.  I knew Mom would enjoy having some space and a balcony to sit on. And of course it couldn’t look institutional or smell bad. Mom would have preferred if I could have found one with “no old people”. That was a bit tougher. So I found her a beautiful 2-bedroom apartment with a balcony that overlooked a little lake.  I called Mom and told her we would be moving her to Indy in a couple of weeks.  She was delighted.  My brother booked a flight and said he would drive Mom from Chicago to Indy and then stay to help with the move.
The next couple of weeks were stressful.  Mom called multiple times a day telling me how unhappy she was and asking when we were going to get her moved. I would explain the same thing over and over again.  It was getting harder and harder to ignore her memory deficits.   Her depression continued to be an issue and the crying and meltdowns continued as well.  

Chapter 5 – Jamie’s Journey

Posted on: September 22, 2014 | 0 Comments

Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie's Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
Being 800 miles away while all this was going on was a bit stressful.  Of course, I was flying into Chicago regularly and my sister and our friend Karen were handling things locally – but my Mom and I had always been best friends and it killed me to not be there daily. We have always been each other’s life line.  We had always talked daily and shared everything.
As fate would have it, our jobs afforded us the opportunity to move.  Luckily both my fiancée and I wanted to return to the Midwest.  One night over diner we decided that Indianapolis would be a good place to focus our interest.  The very next day Scott got a call and was told there was a perfect job for him if we were willing to relocate to Indianapolis.  Coincidence?  I don’t believe so.  Divine intervention? That worked for me!
Anyhow, Scott got the job and we packed up and moved to Indy.  By the time we got settled in our corporate apartment Mom was having daily meltdowns.  She just wanted to be with me and for this all to stop.  I felt the same way, so we decided to move her to Indy as soon as I could find the right place for her.   So, Scott began his new job and I began the joy of looking for a job, looking for a house, looking for assisted living for my Mom and coordinating her move.  

An Unexpected Injury: When Early Onset Dementia Strikes

Posted on: September 22, 2014 | 0 Comments

For years, it was Scott and Linda, just the way it had always been. They were high-school sweethearts, together for 30 years and counting. Neither of them expected dementia to burst into their lives and deal them both a terrible blow.

Note: Dementia Services Group worked with Scott Rodgers and his wife, Linda, during the most difficult period in their life together. Today, we’re privileged to share Scott’s story with you. In learning about his challenges, we hope that readers who are on their own difficult journeys will find hope.
Scott’s Story Linda’s clinical diagnosis was Early Onset Alzheimer’s with Frontal Temporal Dementia. A particularly tough combination, according to the doctors. And a particularly unexpected one -- Scott and Linda were only in their fifties. Scott was determined to do whatever it took to get Linda the care she needed, but it was difficult. There were so many new decisions to consider and all of them were clamoring for Scott’s attention. What kind of treatment plan did Linda need? Which doctor was best for her? Would she be better off in a special facility and, if so, could Scott even find one that could handle her unique situation? The last question was especially difficult to answer.  

How do I chose an assisted living or memory care facility?

Posted on: September 17, 2014 | 0 Comments

In Chapter 6 of Jamie's Journey I mentioned that I did not know how to go about finding an assisted living facility for my Mom and that the internet was probably not the best way to make such an important decision. I wanted to explain that and expand upon it as well. The internet is a great tool for researching options and getting information.  However, nothing will take the place of a tour and knowing what to ask and what to look for.  Here are some critical things to be considered: 1. Many companies that will help you find a place for your loved one at no charge to you are just lead generators.  The issue with that is that these companies will only show properties that are paying them, thus you might miss out on seeing a really great facility. Also, the "care consultants" often do not even live in the same city or state as the facility they are recommending and may not have even seen it.  These folks are not trained care managers and should not be representing themselves as such.  So be very careful utilizing those types of services. 2. There are different types of facilities that can offer different types of care.  This can vary by state. For example: Independent living - these are typically senior apartments/condos that may have services (beauty shop, activities, transportation, restaurant, etc.) on site but the resident is required to be able to live independently.  Often additional private duty care can be brought in if a person needs a bit more assistance but is not ready to move to the next level of care. Assisted Living (aka Adult Foster Care) - these facilities offer a variety of services that can vary from property to property.  Typical services are meal preparation, assistance with bathing, dressing, toileting, mobility, feeding, medication management, transportation to appointments.  These facilities may or may not have secured areas that would be appropriate for a dementia resident that wanders.  Pricing can be either a la carte (based on what services are needed) or a flat rate.  Licensing and regulations vary by state and there is no "standard" services offered. Memory care - many facilities claim to have memory care because that area is secure or "locked".  The label memory care does not guarantee that staff has had dementia training, activities cater to cognitive impairment or that the environment and design is appropriate for those with dementia.  There is huge variation from facility to facility.  "Nicer" or more expensive does not necessarily mean better care. Skilled Nursing - skilled nursing is just that, meaning that a trained nurse is required to provide the care.  This is appropriate when someone has a G tube, is recovering from a very serious illness or injury, or needs true medical supervision.  Most people with dementia do not need skilled care but instead need custodial care or non medical supervison. 3. There are many important considerations when choosing a facility.  Obviously you want the place to be clean, not smell and the residents appear to be cared for and happy, but there are many other criteria that matter such as resident to staff ratios, results from prior state surveys, financial stability and discharge criteria.  You also want to consider how appropriate the facility will be as needs increase and dementia progresses. 4. Most facilities will require an assessment of the resident and they will determine what level of care your loved one needs.  This is not always the most accurate or unbiased assessment, especially in dementia cases. The bottom line is if you are going to make a choice with out some professional assistance, take your time and do your homework.    

Chapter 4 – Jamie’s Journey

Posted on: September 17, 2014 | 0 Comments

Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie's Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
The facility that Mom moved into did not have any apartments on the assisted living floor so we moved her into an independent living apartment and put her on the waiting list for an assisted living apartment.  The difference between the two was that the assisted living apartment was a bit smaller, and the staff would manage her medication and check on her every couple of hours.  She could also eat in a more private dinning area on that floor if she chose.   After a few months, the assisted living apartment opened up and my brother and I moved Mom to that floor. Little did we know the moves would become common place.  

Chapter 3 – Jamie’s Journey

Posted on: September 15, 2014 | 0 Comments

Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie's Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
Cookie at age 67, pre-Alzheimers

Cookie at age 67, pre-Alzheimers

The doctors decided to keep Mom at the hospital to go through rehab to get her strength back.  During that time she underwent more testing and although she was never given a firm diagnosis for her symptoms we were told she should probably not live alone any longer.  I remember thinking “Seriously?  How is this going to work?  What does that really mean? How sick is she? This is going to get better, right?”  



Jamie's Journey

In 2007, Jamie Wilson (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.

Jamie's Journey is deeply personal, but also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring for someone with dementia.

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