Category Archives: Caregiving – Dementia

Compassionate communication and managing difficult behaviors

Date
Posted by

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Copied below are his notes from the break-out session on “Managing difficult behaviors.”

During the break-out session, a handout on “Compassionate Communication” was reviewed.  The handout offers “do’s” and “don’ts” of communicating with someone with memory impairment.  You can find my previous post from 2008 about this terrific handout:

www.brainsupportnetwork.org/compassionate-communication-dos-and-donts/

Two key lines from the “Compassionate Communication” handout are:

“You can’t control memory loss, only your reaction to it.   Compassionate communication will significantly heighten quality of life.”

Words to live by as caregivers!

Robin

————————————

Steven’s Notes

Managing Difficult Behaviors
Session led by:  Alexandra Morris, Alzheimer’s Association
Circle of Care Conference, December 2016

Ms. Morris spent a good deal of time describing some typical dementia behaviors, why they occur and how to change or redirect these behaviors.

Ms. Morris reminded all of us that dementia behaviors are not deliberate. The care recipient has a disease and is exerting all of his or her energy to do the best they can with their disease.  Expending so much effort when trying to communicate and have the care recipient’s needs met can lead to “sundowning” at the end of the day.

Additional dementia behaviors can include repetitive questions, hiding/hoarding objects, delusions and hallucinations, suspicion, wandering and hitting. Besides exhaustion what leads to these behaviors? Here are some ideas.

The care recipient is a person who

– is an adult and doesn’t like being disrespected or under someone’s control

– is trying to get his or her needs met

– needs connection and purpose

– lacks insight into his or her condition

– is doing the best he or she can to deal with the cognitive challenges being experienced

– is  suffering from delusions or anxiety

– is irritated at something the caregiver said or did.

Ms. Morris gave us several tips to dealing with behaviors:

– Kindness versus Truth – “white lies” are better than anger, hurt or causing fear

– Appeal to the care recipient’s motivation (this may require practice to carry off successfully)

– Always say “yes” to a request.  If the outcome could endanger the care recipient, redirect to something safer as soon as possible.

– Don’t try to reason with or over-explain something to the care recipient

– If communication gets stuck, stop. Try physical movement to get unstuck (touch, gently direct the person towards where thy need to go).

– Tell a story – “I wondered about that…” “I’ll have to look into that…”

Probably one of the most difficult challenges happens when the care partner knows that a topic will agitate the person. Here are some tips:

– Determine if the conversation must be raised at all

– Interject with ” I have a question…”

– Change location

– Appeal to the person’s emotions, not the topic itself

– Use humor to defuse a charged situation

– Tell a “therapeutic fib” that helps move the conversation along without frightening the care recipient.

Every behavior has a purpose. You may have to put on your detective hat to determine what the purpose is.

– Let the issue go (“So what?”)

– Alter the situation to make it acceptable

– Keep responses and behavior slow, simple and calming

– Re-frame the issue/redirect to a more comfortable place

– Beg forgiveness rather than ask permission

Ms. Morris reminded the audience that as a care partner you can’t control memory loss, only your reaction to it. Remember that the care recipient’s disability is memory loss. Testing memory, lecturing the care recipient on their inability to find words or express appropriate emotions leads to suffering for all involved.  Instead refer only to the future (when the person with dementia mentions they want food, instead of saying “You ate an hour ago” say ” Why don’t I fix something for you in a bit?”).  Don’t use open-ended questions or try to initiate multi-step processes. Give the care recipient a simple choice between two items or direct their choice -“you look great in the green shirt.”

Finally, Ms Morris mentioned that the goal is to make life more calm and enjoyable for both you as care partner and for the care recipient. As you reassure the person remember that the care recipient cannot remember this reassurance. You’ll need to remind him or her each time.

Care partner communication at all stages of dementia – workshop notes

Date
Posted by
Care partner communication at all stages of dementia – workshop notes

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association (alz.org/norcal) “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Here are his notes from the break-out session on “Care partner communication at all stages of dementia.”

Robin

—————————–

Steven’s Notes

Care Partner Communication at all Stages of Dementia
Session by:  Alexandra Morris, Alzheimer’s Association
Alzheimer’s Association Circle of Care
December 2016

EARLY STAGE

In early stages, where the diagnosis may be mild cognitive impairment, the person may be able to adequately express his/her thoughts, participate in and make decisions about future care but may also misinterpret what others say. People at this stage will have difficulty finding words, participating in/following conversations and struggle with decision-making or problem solving.  The care partner can connect with care recipient at this stage by using clear and straightforward sentences, leaving extra time for conversations (particularly responses), etc. Care partners should be especially careful to include the person in any conversation…related to future care decisions. Communicate in a manner that works best for the person (email, in-person, phone) and speak directly to him/her.

MID-STAGE

In mid-stage disease, language is reduced to basic words and sentences. The person receiving care is more likely to rely on tone of voice, facial expressions and body language to make a connection. At this stage, activities meaningful to the person with dementia are key to maintaining an emotional connection. Clues about cognitive changes include losing words (nouns go first), increasing trouble finding the right word and losing the train of thought or the thread of a conversation. Communication comes more through behaviors than words. Care partners can help by approaching from the front, saying who they are while calling the person receiving care by name. Care partners should move their level to match that of the care recipient, pay attention to tone of voice and take more time to let the conversation flow. Short sentences and basic words are best (one question at a time) and distractions should be limited. It is especially important to normalize experiences (for instance, if the care recipient is afraid, explain what is happening and show that you are not afraid).

Also at this stage, caregivers should join the care recipient’s reality. Keep respect and empathy in mind as you try to give the person multiple cues to help make and maintain a connection. Modeling behavior, keeping gestures fluid and overt (never sudden or coming from the side) repeating as necessary, avoiding “quizzing” about a topic and turning negatives into positives are great tools to help build trust. Writing things down, pointing them out or using photographs or pictures to convey meaning are also very helpful. One cue Ms. Morris mentioned is putting answers into your questions — “Would you like to wear the red shirt today?”  As verbal communication begins to decline, try and asses the care recipient’s needs (pain, bathroom, hunger, temperature, fear, boredom). People with dementia only receive half the pain medication needed compared to functional adults. In addition people with dementia are almost never treated for breakthrough pain (the person with dementia struggles to express this need so the care partner will need to always be alert to checking pain levels and advocating for patient comfort. Let the person with dementia know you hear his/her concern whether through words, behavior or both.

LATE-STAGE

In late-stage disease, the care recipient uses body language and his or her five senses to make a connection. The person may still respond to familiar words, phrases, smells or songs. Pain is often chronic at this stage . If the care recipient is agitated, always check first for pain, then bathroom, food, temperature, etc. The care partner should reply in a similar manner using all five senses to make a connection:

Touch – feel different fabrics, identify shapes by touch, give lotion hand massages, identify items in a bag by touch, visit animals, sculpt, hold the person’s hand;

Sight – brightly colored pictures to look at together, photo albums, paint with watercolors, go bird watching, sit at an open window;

Sound – particularly music (and personally meaningful music-the movie Alive Inside shows this very movingly), traditional or native language music, poems, whistling, singing and humming are all helpful;

Smell – baking (cookies are always great), aromatherapy with essential oils, flowers, grass clippings, fragrant lotions for hand massages;

Taste – favorite foods, popsicles, flavored drinks, ice cream.

At all stages of disease the care partner needs to understand and accept what can’t be changed. The person receiving care retains a sense of self, despite the many losses caused by dementia. You are visiting their world — join them there to make a connection. Always treat the person as an adult, worthy of respect and empathy. Try and decode what need the person is trying to express and help meet that need with soothing and calming words and actions. Recognize the effects of our moods and actions on the person receiving our care.

“Nursing Home Residents Gain New Protections” (NYT)

Date
Posted by
“Nursing Home Residents Gain New Protections” (NYT)

This post will be of interest to those who have family members in nursing homes.

This recent New York Times article reviews the state of nursing homes and regulations affecting nursing homes.  Surprisingly, the Centers for Medicare and Medicaid Services do not require minimum staffing at nursing homes.

Here’s a link to the full article:

www.nytimes.com/2017/01/27/health/nursing-home-regulations.html

HEALTH | THE NEW OLD AGE
Nursing Home Residents Gain New Protections
New York Times
Paula Span
Jan. 27, 2017

Robin

“I’ve had it up to here! Coping with stress while caregiving” – Webinar Notes

Date
Posted by
“I’ve had it up to here! Coping with stress while caregiving” – Webinar Notes

This Thursday, I listened to Janet Edmunson’s webinar titled “I’ve had it up to here! Coping with stress while caregiving.”  The recording is available, and it’s well worth 45 minutes of time.

I’ve jotted notes below while listening to the webinar.  Janet’s main suggestion is to use the 4As to cope with your stress.

There were fewer than 60 participants nationally in the webinar so there weren’t many questions.  I’ve included the small Q&A below.

You have to register for the webinar first and then you can link to the recording.  See:

attendee.gotowebinar.com/register/5425596579784515073

Robin

——————————-

Robin’s Notes from

“I’ve had it up to here! Coping with stress while caregiving”
Webinar by
Janet Edmunson, M.Ed., Affirm Yourself, affirmyourself.com
January 26, 2017

Quotation by Erma Bombeck:  “If life is a bowl of cherries, what am I doing in the pits?”

What is stress?  Response of the body to any demand or stressor made upon it.  We have a lot with caregiving.

The body’s response to stress if “fight or flight.”  Body systems rev up – heart rate goes up, blood pressure goes up, muscles tighten to prepare for action.  Fight = angry, argumentative.  Flight = withdraw socially, watching TV excessively, drinking too much alcohol.

Stress response happens in amygdala.  Theory that stress response triggers inflammation, which triggers heart disease, etc.

When stress becomes chronic (one crisis after another), it can cause long-term health problems.

Stress is different for us all.  Stress starts for our unique perceptions.  Stress begins with us.

To combat the response, we must be aware of our perceptions and try to have a more realistic view of them.

First activity:  write down what specific things are stressing you lately.

Symptoms of caregiver stress (according to Alzheimer’s Association – but these apply to caregivers of those with any condition):  denial; anger; social withdrawal; anxiety; depression; exhaustion; sleeplessness; irritability; lack of concentration; health problems (muscle tension; headache; stomach problems; heart attack; stroke).

“Stress makes us stupid.”  Our brain loses focus when concentrating on the stress.

These symptoms are red flags that are alerting you that you need to do something about this stress level.  It can’t wait.

Add:  behavioral issues; how you think and feel as well as physical issues.

4-A model for coping with stress:
Avoid
Alter
Adapt
Accept

Phil Sweet’s article was helpful in developing this webinar.  (She found it by googling “4 As.”)

AVOID

Avoid unnecessary stress.  Some stressors we should not avoid.

– Learn to say “no.”  Caregiving or household tasks can be delegated to others.  If you get overwhelmed, you may feel resentful.

– Avoid people who stress you out.

– Control your environment.  Example – turn off the evening news if it makes you anxious.  Example – avoid traffic if it stresses you out.  Example – if you don’t like grocery shopping, try grocery delivery or ask friends to help you with grocery shopping.

– Stop time wasters.

ALTER

Alter the situation if you can’t avoid the stressor.  Change the way you communicate and operate in your daily life.

– Be more assertive.  Don’t be a passenger.  Anticipate and prevent problems.  Set “care limits” by being assertive.  Example – insist on professional caregivers even when husband pushed back.  Example – insist on respite time even when care recipient disagrees.

– Express your feelings.  May be impossible if dealing with someone with dementia or executive function.  Use “I” statements.  Example – “I feel frustrated with XYZ.  Is there something we can do?”

– Be flexible and willing to compromise.  Especially true if you always want to be in control.

– Manage your time better.  Poor time management adds to your stress.  Constantly prioritize your tasks and even your relationships.  Drop the unimportant tasks and relationships off your to-do list.  Task:  write down 3 things you want to do more of, and write down 3 things you could do less of.  This gives you an idea of what’s most important and what can be dropped off the list.

ADAPT

Important study on happiness:  only 10% of happiness is due to external circumstances (money, etc).  50% is how we see the world based on our heredity (optimistic, pessimistic).  Still leaves 40% – we can control with our own attitudes and choices.  We can choose our responses!

Adapt means changing yourself.

– Reframe problems.  Try to view stressful situations from more positive perspective.  Example – be thankful for the patience you are learning.  Example – to cope with Charles’s yelling, think about why Charles was yelling rather than responding emotionally to the yelling.

– Look at the big picture.  Can you say “oh well”?

– Adjust unrealistic perfectionism.  Example – to-go food rather than home-cooked meals.

– Focus on the positives.  Think about what you appreciate in life.  At the end of each day, ask yourself “what went well?”  Savor these positives.

Question:  Was it a bad day?  Or was it a bad five minutes that you milked all day?

ACCEPT

– Don’t try to control the uncontrollable.  We couldn’t change the fact that Charles had a neurological condition but we could change our attitude about that and give Charles the best life possible.  Look for meaning or gifts that struggles bring.  If you look, you will find something!

– Accept mistakes.  Usually not the end of the world.  Or ask for forgiveness.

– Learn to forgive.  Maya Angelou changed the word to “give for”; she gave something good to someone else.

– Share your feelings.  Join a support group, talk to a friend, or meet with a professional therapist.

5th A sometimes used – ADOPT

– Make time for fun and relaxation.

– Exercise.  Can affect stress hormones.  Can act as an anti-depressant.

– Eat well.  Keeps you strong.

– Get enough sleep.  Make this a priority.  If you can’t get to sleep, try deep breathing, counting, song lyrics (with visualization), read, jot down worries, etc.

YOUR ACTION PLAN

What of these suggestions will you adopt?

Quotation by Terri Guillemets:  “Stress if the trash of modern life – we all generate it, but if you don’t dispose of it properly, it will pile up and overtake your life.”

Q&A

Q:  I am dealing with a bad attitude 24×7.

A:  Could ask “what’s going well?” to try to get a care recipient to appreciate positives.

Get professional help.  If not, at least find a friend who is willing to let you dump on them.

Avoid the home.  Bring someone in to sit with spouse, if needed.

Q:  Spouse is combative and resists caregivers.

A:  Don’t take it personally.  Your well-being is as important as spouse’s.

Are there ways to get help that wouldn’t be direct caregiving?  Examples – housework, grocery shopping, yard work.

Sometimes care recipients soften up when it comes to having caregivers in the home.

Need to find support for self.

NEXT WEBINAR:
Tuesday, September 19, 4pm CA time – “Feel empowered while caregiving”

5 things to do after a diagnosis

Date
Posted by
5 things to do after a diagnosis

Though titled “What to do after an Alzheimer’s diagnosis,” I think most of the article applies to any diagnosis.  This article is directed as caregivers but some of it applies to those with a diagnosis.

According to the Next Avenue (nextavenue.org) article, the five things to do after a diagnosis are:

* Organize Documents and Resources
* Collect Memories
* Continue to Do Enjoyable Things
* Plan Care Options
* Prepare for Anticipatory Grief

Here’s a link to the article:

www.nextavenue.org/after-alzheimers-diagnosis/

What to Do After an Alzheimer’s Diagnosis
Taking these concrete steps will help you cope later on
Next Avenue
By Amy Florian
January 20, 2017

Robin