“The Comforting Fictions of Dementia Care” (The New Yorker)

This is a thought-provoking article in “The New Yorker,” by Larissa MacFarquhar, about care facilities using nostalgic environments to soothe their residents:

www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care

The Comforting Fictions of Dementia Care
by Larissa MacFarquhar
The New Yorker
October 1, 2018

In the article, she notes that:

Some people in the dementia field believe that to think of the disease as a terrible harm is to think slightingly of people who are living with it.  They argue that, with proper care, a person can live as good a life with dementia as without—in some ways and in some cases even better. … Those working in dementia-care often ask, Should a person be defined by thoughts and memories? Aren’t emotions and bodies enough?

Robin

“Hiring In-Home Help” (Family Caregiver Alliance publication)

This is another terrific publication from Family Caregiver Alliance on “Hiring In-Home Help.”  Topics reviewed include:

  • Do I need assistance?
  • My loved one only wants me to help.
  • “I don’t want a stranger in my house!”
  • How do I find help?
  • Home care agency — pros and cons.  And some questions to ask the agency.
  • Private hire — pros and cons.
  • What will it cost?
  • How can I afford it?
  • How do I find the right person?
  • Write a job description including training desired, driving, transferring skills, experience with people with memory or other cognitive impairments, language skills, housekeeping, pets, smoking, and hours.  If hiring privately, also ask about wages, and are you providing food?
  • Interviewing with lots of sample questions.  Some sample questions include “What is your favorite kind of client?”  “What pushes your buttons?”  “Is there anything in the job description that you are uncomfortable doing?”  “Give an example of how you deal with someone living with memory problems.”  “How do you handle people who are stubborn?”  “What is your experience transferring some out of bed or chair and into a wheelchair?”This is good advice:  “If the care receiver is present, watch the interactions between the attendant and the care receiver. Do they only respond to you, or do they include the care receiver in their answers?”
  • Writing a contract for hiring help.
  • What are the employer’s responsibilities?
  • Communication.

Here’s a link to the webpage (which can be printed):

www.caregiver.org/hiring-home-help

 

 

“10 Tips for Hiring In-Home Help Through an Agency”

Family Caregiver Alliance (caregiver.org) has a wonderful publication titled “10 Tips for Hiring In-Home Help Through an Agency.”  The 10 tips described in detail include:

  1.  Assess your needs
  2.  Work with a reputable agency
  3.  Ask about caregiver background checks
  4.  Inquire about caregiver training
  5.  Ask whether the agency meets local certification requirements
  6.  Evaluate the supervision process
  7.  Ask to meet potential caregivers
  8.  Line out billing ahead of time
  9.  Ask for references
  10.  Talk about a care plan

You can find the publication here:

www.caregiver.org/10-tips-hiring-home-help-through-agency

 

“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