CareGiving.com runs a “Caregiving Podcast Network” on Blog Talk Radio. Every week, they host a 30-minute “FTD Chat” about various aspects of frontotemporal degeneration. (Both PSP and CBD are FTD disorders.) In a chat over the summer, guest speaker Geri Hall, PhD, ARNP, talked about motivating someone with FTD to do things and be less apathetic. As lack of motivation and apathy are issues in all of the disorders in our group, I thought the notes from this podcast were worth sharing with everyone. In addition, the focus of this podcast is helping someone with a neurological disorder do more for themselves, with coaching from the caregiver.
Denise Brown, founder of CareGiving.com, is host of the podcast. The expert speaker, Dr. Geri Hall, works at Banner Alzheimer’s Institute with families coping with all types of neurological disorders.
Brain Support Network volunteer Denise Dagan recently listened to the podcast. Denise has shared some overall insights. Note the two suggestions offered by Dr. Hall —
1- get the help of an occupational therapist
2- have your care receiver attend a day care program
In terms of overall insights, Denise Dagan says:
This 30-minute podcast is a very good talk about helping someone with a neurodegenerative disorder, who is having trouble accomplishing tasks, to be able to do more for themselves with coaching from their caregiver(s). Dr. Hall explains that people with neurodegenerative disorders do have goals. When their executive function process breaks down it prevents them from accomplishing those goals – or even starting them. This is especially true for those with dementia or advanced Parkinson’s disease. Dr. Hall emphasizes that people with executive function issues are not being lazy, willful, or manipulative. She gives specific suggestions for helping them to stay focused to complete each step of a task on the way to their goal. People with [neurological disorders] can suffer from apathy and/or depression, making some projects seem overwhelming. Breaking projects into separate tasks, even over several days, makes them more manageable and less exhausting.
If you have difficulty breaking down a task into its composite steps for your family member, Dr. Hall recommends having your neurologist write you a referral to an occupational therapist (OT) for “Functional assessment and task simplification techniques.” The OT will evaluate your care receiver to establish his/her skill level and teach you, the caregiver, how to break a task into an appropriate number of steps.
Both Dr. Hall and Denise Brown recommend having your care receiver attend an adult day program and pay attention to how they give instruction to the program attendees in a step-by-step fashion. Getting your care receiver used to this method of instruction both at home and at the day program brings continuity to their days. Having a routine both at a day program and home helps them anticipate what comes next.
Denise Dagan’s full notes from the podcast are below.
Notes by Denise Dagan, Brain Support Network Volunteer
Talking FTD with Geri: Motivating Person with FTD
Caregiving Podcast Network on Blog Talk Radio
August 24, 2017
Denise Brown is the host of this podcast. She has been having her own struggle motivating her husband. She recently put together that her husband is quite capable of participating in activities if she takes the time to instruct him step-by-step.
Denise’s expert guest, Geri Hall, PhD, begins by explaining how executive functioning is required to accomplish a task.
You must be able to:
– Set a goal
– Make a plan to accomplish the goal, and
– Be able to carry out the plan.
A person with executive function difficulties knows what they want to do.
– The more they think about it or concentrate on what’s involved in accomplishing the task, the less they are able to organize their thoughts and accomplish the task.
– They are not being willful or lazy or manipulative. Some days executive function may be better than others. Fatigue makes executive function much worse.
– Depending on the neurodegenerative disorder, they may or may not realize they have difficulty figuring out the proper order in which to do things.
A person with executive function difficulties may:
– Refuse to participate because they cannot immediately think how to get started. Don’t ask, “Do you want to…?” The answer will always be, “No.”
– Wander away in the middle – not because they lost interest or forgot what they were doing, but because they cannot think what to do next to accomplish the goal/task. Sometimes, if you touch their arm to distract them from their mental muddle, and give them the next step to continue toward their goal, they can complete the task at hand.
– Getting the steps mixed up or backward. Putting underwear on outside their outerwear, etc.
– Have difficulty maintaining attention or concentration.
To improve executive function and motivate participation in activities:
– Have a consistent schedule day-to-day. Even so, don’t expect them to be able to know what comes next.
– Use non-verbal prompting. They may not process complex sentences well. Aphasia = not being able to get the words out, but can also include not being able to process what’s being said to them.
— Listening to you splits their concentration from what they are trying to do (like shower), so hand them the soap, rather than tell them to pick it up.
— Trying to follow your instructions makes them think about the task. The more they think about it, the less they are able to finish the task.
– Have bright colored toothbrush, comb, cup, plate, etc. so your care recipient will gravitate toward them – and use them. [My mom liked purple! If it was purple, she would pick it… clothing, cake, toothbrush, comb, etc.]
– Post written instructions (on a white board). This may work early in the disease.
– Task simplification = break activities into steps your family member can follow. Take a bath may become: take off your clothes, use the toilet, turn on the water, get in the shower, etc. Or, you may have to break it down further: take off your shirt, take off your pants, take off your underwear… Have your neurologist write you a referral to an occupational therapist for “functional assessment and task simplification techniques” This teaches the caregiver how to break goals into the number of steps your care receiver needs.
– Get rid of distractions, like the TV. They cannot split their attention.
– Keep activities short in duration. Next time you ask them to participate, notice how long it is before they begin to lose eye contact and drift away from the activity. Keep future activities to just short of that time limit.
– The goal is to get the task done – not necessarily entirely independently.
It definitely can be frustrating. It is easier to just let them watch TV, but the reward is worth the effort because it gets your family member involved with life again. They only watch TV so much because nobody is helping them accomplish things by breaking down the task into each individual step.
Denise Brown was able to have her husband help bake blackberry cobbler by giving him one task at a time until he lost interest. Later she built raised beds for him to garden in because he used to love gardening. She goes out with him and gives him each task to accomplish planting, watering, etc. Then, they made eggplant parmesan together when he brought an eggplant in from his raised garden beds, and were able to enjoy the food together. See if you find joy in your loved one’s face when they are able to do something themselves, even with some assistance. It will warm your heart as a caregiver.
Dr. Geri Hall says to recognize as caregivers you have a lot on your plate and need to develop one way you reward yourself at the end of the day (wine, hot bath, etc. that you find relaxing) as a reward for a job well done in the overwhelming effort you make to engage your loved one in life.
Start with things that are over learned, bathing, eating, hobbies. Your care receiver will be able to participate easier doing these activities with help than doing something that’s totally new. Remember, if it doesn’t work, so what? Try something a bit different tomorrow.
Denise says having your family member go to an adult day program a few times a week helps them to be able to follow these step-by-step instructions at home because that is how the day programs get participation from the program attendees. If you can learn how instruction is presented to your care receiver most effectively, you will be more successful at giving instructions at home. Day programs also follow a routine every day, which helps your care receiver anticipate what comes next.
When your family member is at the day program, you have time for yourself. You should take the opportunity to relax and engage with others outside of caregiving conversation, rather than running errands or doing chores.
You will experience resistance from your care receiver to attending a day program, but if you are persistent and allow them some weeks to acclimate to the new place, people and routine, you may find they really enjoy it, eventually.