“Aikido communication – Align, agree, redirect, and resolve” – notes

Caregiver Teleconnection, a service of WellMed Charitable Foundation,
hosts periodic conference calls on caregiving topics.  Last week, the
topic was “Aikido communication – Align, agree, redirect, and
resolve.”  The speaker was a gerontologist with the Texas Extension
Service, Andy Crocker.

With Aikido, one listens for areas of agreement or common ground and
uses “I” messages, which are particularly effective when emotions run
high.  With “I” messages, rather than “You” messages, caregivers can
de-escalate potentially confrontational situations between themselves
and family members or healthcare providers.  This approach is also
useful in de-escalating situations between caregivers and care
recipients, even if the care recipient has cognitive impairment.

The conference recording (audio only) is available here:

https://soundcloud.com/caregiverteleconnection/finding-common-ground-aikido-communication-with-andy-crocker-91018

Brain Support Network uber-volunteer Denise Dagan listened to the
conference call and shared her notes below.

To sign up for email announcements about these conference calls, check out:

http://caregiversos.org/caregiver-teleconnection/

Check out the many examples.  This approach is definitely worth trying.

Robin

————————————————————

Notes by Denise Dagan, Brain Support Network volunteer

Finding Common Ground: Aikido Communication
Speaker:  Andy Crocker, Gerontologist, University of Texas Extension Service

Caregiver Teleconnection
September 10, 2018

Communication is a process or cycle.  When I speak, you respond based
on your individual interpretation of what I said (based on your
experience).  Your sensory perception, health, patience, etc. impacts
your response to my comment(s).

The process begins with how I choose to phrase what I say.  “I”
messages increase the chances of being heard with a positive tone.
“You” messages are confrontational and may result in conflict.

Example:  Conversation between siblings (Andy and Katie) caring for their Mom.

Andy: “You need to help around the house.”  The tone is accusing Katie
of not doing enough around the house and may result in conflict.

Andy: “I need help around the house.”  The tone is stating his need
for help around the house and is not accusing or blaming.

Another example:

Andy: “You made me so angry!”  Blaming Katie for Andy’s anger.

Andy: “I feel angry that you…”  Blaming Betsy’s action for Andy’s
anger.  One level removed is less confrontational.

Sometimes, it is best to make an appointment to speak about something
and actually plan what you will say to get your message across with a
level head.
* Take out “You” messages in the plan for how to communicate your
message or your ask.
* Keep out irrelevant factors from your history together from the discussion.
* Never say, “You always…,” or “You never.…”
* Be sure to express your appreciation for assistance others provide
in your caregiving so they feel appreciated.

Aikido Communication

Tenets / 4 Steps:

Align – find the other person’s perspective.  See the situation from
in the other person’s shoes.
* How would I feel if I were in their shoes
* What does this person need form me?  Praise, appreciation, control?
– Ask: Give me an example of something I can do?  If I could do one
thing to help you, what would that be?
– Rather than saying, “What do you want from me?!” or “What am I
supposed to be doing?!”

Agree – identify issue and concerns with common ground (goals, needs,
feelings) to get on the same page
* I share your concern about…,  I agree we need to do something about…,

Redirect – move to productivity
We both want to do what’s best for…

Resolve –
I think we should explore…,  I think…would be helpful for…

Sometimes, you have to agree that there is no resolution or solution
to the problem at hand.  That, in itself, is progress.

Aikido can be used in communicating with a person who has cognitive
impairment or dementia, where higher order functioning is not present.

Example: Grandson caring for grandfather with dementia who was a
Marine Colonel.  Every morning he rises at 4am and get the day
started.  You can’t tell him he’s no longer a Marine and has no place
to go because being a Marine is his experience of the world.  You must
align, agree, redirect and resolve to understand his motivation for
what he’s doing.  To help him maintain his dignity, activity,
independence as much as possible without adding fuel to verbal or
physical conflict.

* Align – he believes he is a Marine so you must cooperate with what
you can do at home within his ‘world’.  You cannot keep him in bed
longer.

* Agree – you know he always started with shaving, dressing,
breakfast, exercise – all things you can assist him with that align
with his belief that he is a Marine and are things he can do
productively at home.

* Redirect – ask for his help around the house today and direct his
attention to KP duty / cleaning up breakfast. You know he always
shaved twice daily, so be sure to include that activity to the daily
schedule.

* Resolve – In dealing with someone who has dementia, resolution is
that grandpa sleeps through the night and accepting that he rises as
4am, obtaining grandpa’s cooperation, calm demeanor, emotional calm
throughout the day.  Recognizing that what works one day may not work
the next day – just give your initial inclination / plan a try and see
how effective it is.

Aikido Communication is one more tool in your toolbox to help get
through your day, along with:
* Mindfulness & relaxation techniques
* Respite resources
* Caregiving or Home maintenance assistance (volunteer friends/family
or hired help)

Question and Answer

Q. Aikido is like Naomi Feil Validation.

A. Both her method and Aikido have the same understanding of how to
understand and manage someone with dementia, but Validation is less
useful for direct communication.  We can be assertive without being
aggressive or confrontational.  Using the “I” messages to identify how
you feel and what you need and suggest what needs to be done without
the conversation devolving.  It is not easy because it does not come
naturally to us, but it is effective.

Q. I found I always did what my father told me, but now that he has
dementia I find I am the one who needs to tell him what to do and how
to do it to keep him healthy and safe.  There is a big disconnect when
your eyes see your father, but your mind tells you he is not the same
man he was.  The disconnect is painful and challenging.

A. Good future topics are role loss or role change.  There is a good
amount of loss and grief when the person you used to look to for
direction and advice is no longer available to you because of their
cognitive changes.  At the same time, you need to take charge and do
what’s necessary to look after him.

A. There are family members surrounding the primary caregiver and care
recipient who are all struggling with grief before the care
recipient’s death (anticipatory grief).  There is grief with the loss
of each of the care recipient’s abilities.  Often there is a family
member who doesn’t want to help or visit because they don’t want to
see the care recipient in ’that’ state.  That’s anticipatory grief.
Sometimes, it is helpful to identify it as grief in a conversation
with them to try to help them work through their grief and garner
their help in caring until the person actually does pass away.  They
may be adamant that they don’t want to see their family member in
’that’ state.  It is sad but you must respect that avoidance is their
way of dealing with their grief.

“Dementia Spouse Caregivers’ Relationship Closeness” – Dissertation Excerpts

This is a doctoral dissertation from 2017 on the impact of the
relationship for a spouse caring for a husband or wife with dementia.
Though dementia caregiving is the focus of this dissertation, I think
the document applies to caregiver spouses where the care-recipient
does NOT have dementia.

The document is 280 pages so I didn’t read it all but skipped around.
Despite the fact that the language is scholarly, many of the pages are
worth reading.

I’ve provided two long excerpts below. The second excerpt includes
this sentence: “It is also known that a spouse’s vows, vigilance,
worry and tireless caregiving result in incredible morbidity.” I
think this refers to the caregiver’s morbidity. The dissertation’s
author indicates that “caregivers would be in better states of health
and wellness if clinicians were aware of the [couple’s] ability to
communicate…”

Here are the two excerpts I found the most interesting:

(From page 55 and 56, using the page numbers of the dissertation)

Couplehood. Lobo Prabhu et al. (2005) skillfully depicted the
relationship of husbands and wives… When dementia was introduced,
the fragile balance was thrown into chaos. The authors constructed a
framework to explain why couples stayed together and offered practice
implications to enable spouses to continue caregiving with sound
support. They reported that couples retained togetherness, despite
dementia, when the basis of stable marriage included concepts of:
1. quid pro quo (an equal exchange or substitution),
2. values of commitment (respect, pride, and accomplishment despite sacrifice),
3. holding on to the familiar (vs. letting go and abandonment),
4. rupture vs. repair of marital bond (what is the minimal
gratification the caregiver requires to sustain the relationship? will
a smile or eye recognition suffice?),
5. mastery of separation (decisional capacity and choice migrates from
care-recipient to caregiver),
6. spirituality (altruism and prayer),
7. changes in sexuality (loss of shared togetherness) and
8. emotional support (social connections, family support, and kin-care).

(From page 80 of the dissertation)

Regrettably, the couple’s “together life biography” and pre-dementia
relationship closeness are greatly underestimated in clinical practice
(Davies & Gregory, 2007). Pre-dementia relationship closeness and
current relationship closeness colors the way a spouse caregiver makes
decisions and renders effective and nurturing care, or not. It
triggers advocacy or ambivalence. It is also known that a spouse’s
vows, vigilance, worry and tireless caregiving result in incredible
morbidity. Moreover, empiric literature has shown relationships
characterized by kindness, respect, and warmth, or less criticism,
conflict, and family dysfunction are associated with better caregiver
and care-recipient morbidity and caregiving outcomes. Additionally,
the care-recipient behavior is a significant controlling factor for
the caregiver’s reciprocal emotions, relationship, burden, and
depression. Therefore, caregivers would be in better states of health
and wellness if clinicians were aware of the dyad’s ability to
communicate, the efficacy of their interactions, the strengths, and
weaknesses activated by dementia disease and the vulnerabilities now
present in the dementia dyad’s life together experience.

Here’s a link to the full document, in case you’d like to check out
more of the dissertation:

https://opencommons.uconn.edu/cgi/viewcontent.cgi?referer=&httpsredir=1&article=7648&context=dissertations

Heart and Soul: A Phenomenology of Dementia Spouse Caregivers’
Relationship Closeness
by Elena Schjavland, PhD
University of Connecticut, 2017

Thanks to an online friend who is an FTD caregiver for sharing this
dissertation with me.

Let me know if you find other parts that resonate with you,
Robin

“Compassion fatigue,” including typical trajectory – Notes

On August 1st, Caregiver Teleconnection hosted a teleconference by social worker, Amy Cunningham, on the topic of compassion fatigue as experienced by caregivers.

Amy explained the difference between stress, burnout and compassion fatigue. She identified the signs, symptoms and trajectory of compassion fatigue as well as the five habits of resiliency that can help caregivers to grow, rather than be traumatized by caregiving.

There are five habits you can develop that, when practiced every day, will not only make you the best caregiver you can be (happier, more energetic), but keep your health intact so you will be able to care for your loved one for as long as they need you.  The habits of resiliency include:

#1 – Physical resiliency
#2 – Spiritual resiliency 
#3 – Emotional resiliency
#4 – Psychological resiliency
#5 – Self care

Amy reviewed the typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope.

You can find the audio recording here:

soundcloud.com/caregiverteleconnection/compassionfatigue8118

To sign up for email announcements about these conference calls, sponsored by the WellMed Charitable Foundation, check out:

caregiversos.org/caregiver-teleconnection/

Brain Support Network volunteer Denise Dagan listened to the conference call and shared the notes below.

Robin

—————————————————————

Notes by Brain Support Network volunteer Denise Dagan

Compassion Fatigue
Speaker: Amy Cunningham, Social Worker

Caregiver Teleconnection
August 1, 2018

Amy personally experienced compassion fatigue.  Afterwards, she recovered she developed a curriculum to share with others how to identify symptoms and overcome compassion fatigue.

During a flight with her 5 children under 9, even though Amy was attentive to the flight attendant’s instructions, a flight attendant came to check with her that Amy understood the importance of putting her own mask on before helping her children.  That’s how caregiving is.  Our first instinct may be to care for our family member before ourselves, but if we are incapacitated by the stress of the situation, we are of no help to our family.  You must look after your own needs first!

Stress is difficult to define because it is subjective.  What one person finds stressful, another person may not find stressful.  Stress is unavoidable and not a bad thing with the right mindset and self care.

A good place to begin is to do a self assessment – and don’t lie to yourself or others about how you are managing.

Deviation from baseline is what you want to pay attention to in your self assessment.  Consider these personal attributes:
* If normally you have a good memory but lately you can’t remember anything – you may be overstressed.
* If normally you are in good spirits but lately you are short tempered or moody – you may be overstressed.
* If normally you are well coordinated but lately you are dropping things constantly – you may be overstressed.
* If normally…  Can you identify areas where your normal is deviated from baseline?

We all wear many hats, but how do they affect your stress level?  What is the cost to your health, family or workplace?  If you are a tired, cranky employee, you come home and are a tired, cranky Mom/Dad/daughter/son etc.

Homework:  Take 10 minutes every day to do something you enjoy.  If you have more time to devote to your own joy – do it!  This homework is especially for those of you who feel as though you don’t even have 10 minutes to take care of yourself.
Run, walk, read, meditate, watch a video w/a coffee, tea or soft drink, call a friend or relative (but don’t talk about caregiving!)

What is compassion fatigue?  For today’s talk, it encompasses vicarious traumatization, compassion fatigue and secondary traumatic stress, as follows:

* Vicarious traumatization – a state of tension and preoccupation with someone whom you have helped or are helping.  It can manifest either as reliving (PTSD) a traumatic event another experienced – OR – you begin to avoid all reminders of a traumatic event.

As an example: when Amy was working in a group home she was listening attentively to a client’s traumatic event.  In the middle of that conversation Amy’s cell phone rang.  She grabbed it and swiped the screen to silence it.  Henceforth, whenever her cell phone rang she recalled the trauma her client was describing.

Having a vicarious traumatization response happen up to a few months from the original hearing of the trauma is normal for those who devote themselves to caregiving because they tend to have a higher threshold of empathy.  Empathy is the ability to put yourself into another’s shoes.  You should be concerned if you experience a vicarious traumatization response longer than a few months or it begins to deviate your behavior from your baseline.

* Compassion fatigue – used to just be called, ‘burnout.’  It is a state of tension and preoccupation with someone whom you are taking care of, a traumatized survivor.  Generally a work related secondary exposure to an extremely traumatic, stressful event.  ‘Work’ includes unpaid, family caregivers, as they are still at risk.

* Secondary traumatic stress is about being afraid.  This is especially seen in child protective services workers where they begin to believe everyone is out to threaten them and their family.  That is an extreme example of how stress affects your behavior.

The term, ‘burnout,’ encompasses a range of degree all the way up to compassion fatigue.  In its simplest form burnout is a state of extreme dissatisfaction with your work.  It is a work related hopelessness and a feeling of being ineffective.

To distinguish between burnout and compassion fatigue.  Ask yourself, “Do you love the kind of work you’re doing?”  If the answer is yes, but you feel some of the symptoms Amy will describe, you may have compassion fatigue.

Symptoms of compassion fatigue:  Significant deviation from your individual normal in these areas are common symptoms of compassion fatigue.

* Emotional indicators – anger, irritability, sadness, depression, prolonged grief, numbness (not wanting to feel anything).  There are some incidents where the timeframe for grief is nearly infinite.  Amy is not talking about those circumstances.

* Personal indicators – isolation (pushing others away, not wanting to communicate), cynical, pessimistic, critical, mood swings, substance abuse (alcohol, drugs, food, sex, attention, TV binging) to fill a void, memory or concentration problems, self entitlement (justification of negative maladaptive behavior because of the things you do, e.g. social worker stays up all night with a client but the next day they are cranky with coworkers, e.g. someone who worked 60hrs in a week helping others, then announce they will be wasted all weekend)

* Physical indicators – general sickness, cold of flu symptoms, sleep issues, no energy, insomnia.  Note: Disruption of normal sleep patterns can cement PTSD symptoms because sleep is when the brain cleanses itself of traumatic events.  If you are not getting good sleep as a caregiver, you should make sleep a priority by trading the night shift with another caregiver so you do not further traumatize yourself and contribute to caregiver fatigue.

* Work indicators – avoiding certain people, missing appointments, suddenly becoming tardy frequently, lack of motivation, just ‘going through the motions,’ being a workaholic (certain personality type: when things get tough, they get tougher), becoming demoralized, feeling under appreciated or under-resourced (when those challenges of the job didn’t used to bother you)

Compassion fatigue can be arrested and treated at any time.  You just need to identify it to be able to move beyond it.

The typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope

One student of Amy’s compassion fatigue said she is in phase 1 Monday, phase 2 Tuesday, phase 3 Wednesday and phase 4 Thursday and Friday.  Amy wonders how true that is for many people.  The idea is that if you can take care of yourself and find balance between what you need and what you need to do, you can be your best for both yourself and your care recipient.

One study found people who experienced growth after trauma, so they studied them to find out what they did differently.

They found 5 habits of resiliency that, when implemented daily, result in retraining your brain resulting in personal growth and longevity.

#1 – Physical resiliency: good sleep (6-8hrs, 5dys/wk), nutrition (Mediterranean diet), exercise (take stairs, park at edges of parking lots to get more steps in a day).  It is important to tell yourself that you are intentionally doing these things for your own well being because our brains are hard wired to recognize threats to our safety.  You have to reinforce the positives that you do for yourself to get the most benefit, to remind yourself to make these changes and to reinforce these new habits.

#2 – Spiritual resiliency: prayer, meditation and strong relationships (at least 1-2 people who know your good, bad & ugly)

#3 – Emotional resiliency: cry (releases endorphins which are natural pain relievers), laugh (laughing can relax you for up to 45 minutes, reduce risk of heart disease), give & get physical contact (increases oxytocin, making you feel more bonded to others)

#4 – Psychological resiliency: acknowledge your own personal victories (even if it is for something you do every day like put food on the table for your family.  Acknowledge that the meal is well balanced, it is on time, or that you dressed the table with a cloth or flowers.  Give yourself credit for a job well done throughout your day, every day)

#5 – Self Care: especially in your transition from work to personal time – take off your badge, change clothes, give yourself some music or meditation on your commute home.

Question and Answer

Q. A couldn’t believe her mother was living this long and wondered how long will caregiving for her mother go on?

A. Don’t feel any shame around that.  It is normal and doesn’t mean you love her any less, but that you have a constant demands on you and pressure.  Taking time to implement these habits of resiliency is important so you are not only giving your best, but you are your best.

Q. It is interesting to say that stress is a deviation from whom we really are.  In my case I always enjoyed gardening.  Now I don’t feel like it.  To relieve stress should I go back to gardening?

 

A. Don’t force yourself to do a therapeutic activity because that would have the opposite of the intended affect.  At the same time, our natural mechanism is to push away those things that used to bring joy.  It may be like exercise, most people don’t want to do it, but we feel great after we’re finished.  Try to bring gardening back into your life.  If you find you no longer enjoy it, even after you finish, move on to some other activity you can look forward to.

Q. Someone told a listener that the best way to relieve stress is to get yourself physically away from the stressful situation.

A. That can certainly help to some extent, but you want to make sure that you’re not just running from the situation.  It is not always possible to get physically away so finding moments when you can find stress relief in the middle of the day like through meditation, funny videos, taking a short stroll, reading, etc. is beneficial to your health, boosts your energy and improves your interaction with your care recipient.

Q. What do yo mean by physical contact?  Can it be with a pet or child/baby?

A. Absolutely! doesn’t matter if you are touching another person (of any age) or a pet.

Eleven things “they don’t tell you about dementia” (Dementia Journey)

When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order.  She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.

dementiajourney.org/2018/07/10/5589/

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

Compassion fatigue in caregiving and ways to take care of yourself

Though this article has “dementia caregiving” in the title, the issue of “compassion fatigue” applies to all caregivers.  In caregiving, the “demands are many” and there is not enough time to get everything done.  Any many times the person receiving care resents being helped or may not express appreciation.

The author believes caregivers can overcome compassion fatigue by caring for themselves.  She suggests several ways to care for yourself:

* don’t take outbursts personally
* be kind to yourself
* share your feelings
* talk to someone
* find support
* validate your feelings
* grieve
* have fun

This is a blog post on the Huffington Post Canada website so some of the words having British English spellings.

Find the post here:

www.huffingtonpost.ca/gail-elliot/compassion-fatigue-caregiving_a_23389637/

Compassion Fatigue Is A Reality Of Dementia Caregiving
If you are connected to the world of dementia care, the demands are many. In your quest to help others, are you taking time to care for yourself?
by Gail Elliot
HuffPost
03/20/2018 

Robin

 

Apathy – 3 components, case study, vs. depression, and strategies

Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia.  In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.

The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.

Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.

I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.

Robin

———-

https://www.theaftd.org/wp-content/uploads/2018/03/PinFTDcare_Newsletter_Winter_2018.pdf

Excerpts from
Partners in FTD Care
WINTER 2018
Association for Frontotemporal Degeneration

Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.

What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.

How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.

Apathy
Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.

Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
performance.
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.

 

Five Tips for Improving a Difficult Caregiving Day – Webinar on Wed 2/28, 11am

Family Caregiver Alliance (caregiver.org) is hosting a webinar next Wednesday, 2/28, at 11am (CA time). The title is “Five tips for improving a difficult caregiving day.”  Though the title is about caregiving generally, the description talks about dementia caregiving. Hopefully one of our volunteers can listen in and take notes. If you attend, please shre what you learned! Details are below.

———-

Webinar Topic: Five Tips for Improving a Difficult Caregiving Day
When: Wednesday, February 28, 11 a.m. to 12 noon (PT)
Host: Family Caregiver Alliance (caregiver.org)
Cost: No Charge

Register here: register.gotowebinar.com/register/481692034697798145

Description: Caregiving can be a roller coaster: Some days you’re enjoying the ride and some days you’re holding on for dear life. It can be unpredictable and downright difficult! This webinar will provide you with five tips to help your day be a little less stressful. There will be an extended time for questions and answers about dementia caregiving — send your questions in with your registration!

Objectives:
* Review common changes experienced by a person living with dementia
* Discuss the effects of caregiving on caregiver health
* Learn five practical tips

Speaker: Lindsey Vajpeyi, BA, ADC/MC
Lindsey Vajpeyi has earned degrees in sociology and gender studies, holds an Activity Director Certification with a Specialization in Memory Care, has an Alzheimer’s Association essentiALZ® Plus Dementia Advanced Care Certification, and was previously a Certified Master Trainer for the Best Friends™ Approach to Alzheimer’s Care. She has experience in activities and wellness in long-term care, as well as in programs and services at a large non-profit. Lindsey’s entire career has been dedicated to working with persons living with dementia and their caregivers, with a focus on improving quality of life for all affected by dementia. Lindsey is currently the Director of Education and Outreach at Insight Memory Care Center in Fairfax, Virginia.

Questions? Contact Calvin Hu, Family Caregiver Alliance, [email protected], (415) 434-3388

 

“Family Meetings: Even when a Loved One Resists” – Conference Call Notes

CaregiverSOS (caregiversos.org) is a website run by the WellMed Charitable Foundation in Texas.  They offer some services nationally, including Caregiver Teleconnection, which are conference calls with speakers on caregiving topics.  Today’s teleconference was about family meetings.

Caregiver Teleconnection calls are archived within a week of the original presentation.  In about a week, you can find the archived audio recording of this teleconference at:

caregiversos.org/caregiver-teleconnection/first-steps-in-caregiving/

(You may need to scroll down a bit to find the list of archived recordings.)

Today’s conference call covered these topics:
– What is a family meeting?
– When should a family meeting be held?
– Why do we need a family meeting?
– Identify the purpose of the meeting.
– How to address the issue of a resistant elder.
– Who needs to attend a family meeting?
– Things to consider when inviting people to a family meeting.
– Where to have a family meeting.
– Tips for a successful family meeting.
– A Case Study
– Resources

There are four family meeting-related resources mentioned by the speaker:

1- Book titled “The Caregiver’s Path to Compassionate Decision Making,” by Viki Kind, 2010

2- MN Board of Aging webpage of family meetings at
mnaging.org/en/Advocate/~/media/MNAging/Docs/Advisor/caregiver/CW-HoldingFamilyMtg.ashx

3- Family Caregiver Alliance webpage on family meetings at
caregiver.org/holding-family-meeting

4- AgingCare.com webpage on family meetings at
www.agingcare.com/Articles/holding-family-meetings-foraging-parents-142664.htm

Brain Support Network volunteer Denise Dagan listened in on this morning’s call and shared these notes.

Robin

————-

Notes by Denise Dagan, Brain Support Network Volunteer

Family Meetings: Effective Planning for Aging – Even when a Loved One Resists
Speaker:  Kim Olmedo, LCSW, social worker
Caregiver Teleconnection (conference call), by Caregiver SOS
February 12, 2018

What is a family meeting?
Any formal, structured meeting of family members that may also include professionals and/or clergy to communicate about an older adult’s care due to declining health or difficulty functioning.

You can have a family meeting to discuss:
– What kind of care do they want at the end of their life?
– What arrangements must be made to care for their increasing medical needs?
– What arrangements must be made due to their declining cognitive functioning?
– Where shall they live after a medical crisis?

When should you have a family meeting?
– When there are unresolved issues, like the family doesn’t know what kind of advance care planning is already in place.
– When there are new problems, like the elder is no longer able to live alone.
– When safety is an issue, like driving, home safety (stairs, gas burners, etc.), inability to prepare meals or shop, etc.

What is decided during a family meeting?
* Resolve issues, like who will be the primary caregiver?  Who is the back up caregiver when the primary caregiver is ill, working, or on vacation?
* Identify goals, like the timeline for moving into assisted living.  What is the preferred outcome?  Is there a set outcome, or is a final decision something that can be negotiated?  Identify goals for rehabilitation or long-term care.
* What does the family want to accomplish?  What type of care facility is appropriate for their care?  Where should that facility be located?  Nearer to children or in the same community where they have been living.  What are the needs and issues of the care recipient?

Identify the purpose of the meeting:
* Sometimes, the purpose is simply to clarify things, such as an advance care planning meeting, where the issue is determining who the decision maker will be, learning the person’s wishes for end of life care, and completing advance directives.
* Other times there may be a specific purpose or issue, such as lack of safety in the home and what choices there may be to mitigate the safety issues, like private duty home care, moving the elder to a child’s home or into assisted living.
* Have an agenda to keep the meeting on track and moving forward.
* Sometimes, you need to break the decision-making process into a few meetings because it would take too long and be too overwhelming to do all at once.  Sometimes, during the first meeting you find information is missing and it is wisest to break and gather the missing information, then reconvene to discuss how to move forward.

How to address elders resistant to making changes:  
* How resistant is the elder?
* Giving them choices helps them to accept change and adjust well.  However, only present truly available options (that are feasible and which they can afford).  They may not be ideal options the elder prefers, but by having a choice the elder feels a certain amount of control.
* If there aren’t choices available, how can the news be presented in the best possible light?  See the Case Study for an example.  See “The Caregiver’s Path to Compassionate Decision Making,” Viki Kind.  In this book, the author explains how her father could not make decisions, but could have some choice in the big picture.  She researched care facilities and took him to her top two options and let him decide that.  Sometimes, presenting the facts of the situation helps an elder person be able to see that change is necessary.  Treating them as an adult with some choices is helpful to getting their buy-in.

Who should attend a family meeting?
* The care recipient?  Sometimes, No.  If they have dementia or critically ill, they are unable to participate.
* Close family – children and spouse.  Even distant children via Skype.
* Extended family.  Sometimes siblings, nieces, nephews, etc. are very involved.  Don’t leave them out.
* Neighbors and chose friends
* Professionals.  They can be the bad guy, deflecting blame from adult children who must be the hands-on caregiver and suffer wrath.
* A Geriatric Care Manager or Social Worker, if involved.  They can be an objective voice and present disappointing news to the elder person.  If family members present disappointing news, the elder may resent them and be uncooperative toward them.  It is best if a professional or clergy presents disappointing news to elders, especially if they have dementia.
* A long-time friend or clergy member as an ally to the elder person, so they don’t feel “ganged up on” or betrayed by the family & professionals.  Before you choose this person, be sure they will both support the elder as well as the family’s goals, so he/she doesn’t undercut the family’s efforts.

Where do you meet?
* At the elder’s home.  This can be the safest, most convenient place, but if you are discussing moving them from this home it can reinforce resistance to moving away.
* At a family member’s home, although this may not feel safe to the elder.  They may feel “ganged up on” or attacked by the home owner and family.
* At a neutral location; doctor’s office, hospital, lawyer’s office, church, a friend’s house, etc. can minimize extreme responses to the suggestion of a move.

Tips for a successful family meeting:
* Listen to all parties respectfully.
* Treat the elder as an adult and speak directly to him/her.
* Stay focused, don’t bring up family history, etc. that is distracting from the purpose of the meeting.

Case Study:
Lenora (late 70s widow) living at home with mild dementia & in-home caregiver whom she didn’t like.  Didn’t want a caregiver.  Move to assisted living was nearing.  Daughter, Emily, lived out of state and going through divorce.  These two had a difficult relationship and usually argued when talking.  Daughter asked Kim to mediate their phone calls.  Emily was increasingly worried about Lenora’s home safety.  Kim visited Lenora weekly and Lenora frequently commented on Emily’s wellbeing.  Emily and Kim had more frequent conversations about what to do next for Lenora.  Kim met Viki Kind (book author) and asked how to proceed to speak with Lenora about assisted living.  Viki’s input helped Kim realize that Lenora’s worry over Emily could help her transition to assisted living.  Kim acknowledged Lenora’s concern over Emily’s wellbeing and, together, Kim and Emily suggested Lenore move to assisted living as something Lenora could do for Emily to ease Emily’s worry over Lenora during her divorce and with all she had to do daily for her kids and full-time job.  Moving to assisted living in this case was cheaper than in-home care.  Lenora didn’t want to move, but felt she was doing something to help her daughter, so agreed and adjusted to assisted living.  Of course, she missed her home, which Kim and Emily validated, but they continued to thank her for making this adjustment for Emily.

Resources:
• Kind, Viki. The Caregiver’s Path to Compassionate Decision Making: Making Decisions for Those Who Can’t. TX: Greenleaf Book Group Press, 2010.
http://www.mnaging.org/en/Advocate/~/media/MNAging/Docs/
Advisor/caregiver/CW-HoldingFamilyMtg.ashx
https://www.caregiver.org/holding-family-meeting
https://www.agingcare.com/Articles/holding-family-meetings-foraging
parents-142664.htm

Question & Answer:

Q.  Support group leader now finds her own mother has dementia.  Mother lives independently, drives and has big house with several pets.  She has announced over the years she will never leave her home.  Is there anything besides in-home care?  Live-in caregivers?  Daughter lives 3000 miles away.

A.  Most of Kim’s experience with live-in care has not been successful.  There are some situations where it can work, especially if you can find someone younger who is more of a companion than caregiver or a grandchild who would benefit from having a free or cheap home in return for caregiving.  You may start with someone coming in to help with the animals to get her used to having someone coming in.  Once she realized how much help that is, that person (or someone else) may be able to come in and drive for her, or help with other things.

A.  Contact your local animal rescue services.  They may be able to provide an animal care volunteer or find adopted homes for some of the animals.

Q.  How have you found people manage when they have promised their family they would not put them in a nursing home?

A.  It’s not always realistic because of dementia or safety.  It may be physical reasons, like stairs.  Because women work so much more than prior generations, it is unrealistic to promise you will not be placed in a care facility.  Sometimes, a doctor can present reasons why they can’t stay in their home.  Care facilities are SO much better than they used to be, taking them to a few can make the option better than they imagined.

Q.  In Florida, the PACE Program provides in-home support (some dementia, depending on degree).  This can be a gap-filler before Medicare kicks in.

A.  Every state is different.  Area Agencies on Aging (AAA) can provide vouchers to cover some in-home care, but it will be minimal.  Your State’s AAA will know all the resources in your area.  Other resources:  Elder Care Locator: 1-800-877-8116, eldercare.acl.gov.  You can search by city and need (legal assistance, home modification, etc.).  Aging and Disabled Resource Center (ADRC) for your state/county may also be helpful.

A.  Sadly, demand is expanding, but resources are not.  Assisted living centers are expanding, but they are prohibitively expensive for many families.  There are very few federal dollars for long term care.  Mostly, long term care needs are covered by non-profits.

Q.  In a family meeting, how do you balance the conversation when one or more participants are dominating the conversation?

A.  It doesn’t happen very often, but sometimes there is one participant who defers to another, which can complicate the dynamics of the meeting.  Having an outside, objective participant helps with this.  Having an agenda helps.  Set an end time for the meeting helps.

Q.  My husband’s sons are not capable of care taking and they all have crazy work hours, so I am the conduit to coordinate communication.  I give them each information about advanced directive, etc.  It’s challenging.  It may not be feasible to have everyone in the same meeting.

A.  Use email, closed Facebook group to communicate with everyone simultaneously.  That way everyone received the same information.

Q.  My parents want to stay at home and die at home.  Dad has COPD and Mom has dementia.  It is more expensive than a facility.  Family fear is that we are too late for Mom to move her to assisted living because she needs more care.  Do you get to the point where you have to make the choice for them?

A.  Sometimes they are not able to make that decision.  Viki Kind talks about different kinds of decision making (sliding scale).  Their ability to make decisions depends on their level of dementia.  She had to make that decision for her Dad, but he could decide which one he felt most comfortable with, even which room he would have.  Getting all five of their children on the same page is another issue.

Q.  How is Viki’s sliding scale set up?

A.  If a person has no capacity that is one end of the scale and makes no decisions.  In some assisted living facilities staff puts out two outfits so they make a choice without being overwhelmed.  Depending on their level of dementia, you would limit their options.  They would not participate in medical decisions because they can no longer comprehend the options and potential outcomes, but can say who their medical power of attorney will be.

Q.  What happens for people who have zero resources?

A.  The family would ideally have an assessment from a geriatric care manager, but it costs several hundred dollars.  Beyond that you are looking at services from the Alzheimer’s Association or other organizations.  Often an elder winds up in the hospital and the social work staff will get involved and help the family find options for the elder’s future care.  Some churches have ministries for older adults so look outside the proverbial box.

Q.  How does somebody find a geriatric care manager.  Even though it costs a few hundred dollars it is well worth it, especially if your family dynamics are challenging.

A.  aginglifecare.org – Professionals with training and experience on doing aging assessment.  You may be able to access them through your hospital’s social work office, if your elder is already hospitalized it is worth asking.

“Choose Your Attitude for the Journey” (empowering caregivers for the long journey)

Though this handout is for a dementia caregiving class by a woman whose husband had Lewy body dementia, I think this resource applies to all caregivers. In the few places below where you see “LBD,” replace that term with the disorder with which you are coping (if it’s not LBD).  See what you think….

Online friend Pat Snyder’s husband John died with Lewy body dementia in November 2015. She is the author of a wonderful book for those coping with the early stages of LBD titled “Treasures in the Darkness: Extending the Early Stage of LBD” (available through Amazon.com). Pat generously gave us a copy, which is circulating among local support group members.

Pat is teaching a dementia caregiver class in Wake Forest, NC. Her mission is to teach as many “rubber meets the road” tools and techniques as she can, in a context of preserving personhood for the patient while educating, encouraging, and empowering the caregiver.

Pat recently shared the notes from the first lesson of this caregiving class. She recommends five initial steps that all caregivers take at the beginning of their caregiving journey so that they can be strong for the duration of that journey. The five steps are:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

The lesson goes through these five points. Pat gave permission for me to share her lesson notes here.

Robin
————————-

“Choose Your Attitude for the Journey” (Lesson 1**)
from Dementia Caregiver Class in Wake Forest, NC
by Pat Snyder ([email protected])
February 2018

There are five first steps that I recommend for you to take as you begin your dementia caregiving journey. These approaches will strengthen you in that role for the duration:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia.

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:

• Learn about dementia symptoms.
• Learn about treatments for LBD symptoms.
• Learn about non-pharmacological (non-drug) interventions.
• Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
• Find the right doctor who knows how to treat LBD
• Connect with other LBD caregivers to continue strengthening yourself.

When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
• Softening the light in the room
• Using oils like lavender to calm agitation
• Playing favorite music
• Having only one person speak at a time while in the room
• Explaining what you are about to do before you begin to do it

These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable — and it is worth it.

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name—Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road. All of a sudden, John barked at Michael harshly and told him he needed to be quiet. Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence. This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.” The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.. Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish. I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.” John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.

 

**A draft form of this lesson first appeared in a free online booklet, “Prepare to Be an Engaged LBD Care Partner,” by Rosemary Dawson, Jeff Maruna, and Pat Snyder. The booklet may be found here:

www.lbdtools.com/files/CPGuide%20Dawson.pdf

**A briefer form was published by LBDA.org in Resources section.