Tips for replying to false accusations, rude talk, or incomplete verbal requests

This post may be of interest to those dealing with communication problems caused by dementia including false accusations, loss of verbal impulse control, and inability to complete a verbal request.

In this short article on AgingCare.com, Teepa Snow, a dementia care expert, shares three common communication breakdowns caused by dementia —

1- false accusations:  often directed toward those most involved in their care simply because those are the people they see the most.

2- loss of verbal impulse control:  perhaps someone who used to be quite polite suddenly becomes unable to hold his/her tongue and says something rude or inconsiderate, even with some expletives thrown in.

3- inability to complete a verbal request:  the care recipient cannot be specific in his/her comments or requests.  The examples given is saying “I need….” but being unable to finish the sentence.

Ms. Snow outlines “how caregivers can respond in a way that will diffuse tension and make their elderly loved one feel better.”

The article is worth checking out:

www.agingcare.com/Articles/communicating-with-dementia-patients-150914.htm

Things People With Dementia Say: Common Phrases and How to Reply
Agin2012gCare.com
by Anne-Marie Botek

Thanks to BSN volunteer Denise Dagan for evaluating the article for us!

Robin

Caregiver safety in face of anger and aggression

This post may be of interest to caregivers dealing with loved ones who are angry and aggressive.

Many people in the local Lewy Body Dementia support group will remember long-time Brain Support Network volunteer Denise Dagan. In the past, she has shared helpful resources she’s found.  She’s doing that again today….

Here’s something she shared on the topic of caregiver safety.  This is Denise’s description of a 30-minute podcast about anger and aggression aimed at the caregiver.

Robin

————————————————————————

Notes from Denise Dagan, BSN volunteer

Talking FTD with Geri: Caregiver Safety
Guest – Geri R. Hall, PhD
Podcast – August 25, 2016

On August 25, 2016, caregiving.com presented “Talking FTD with Geri: Caregiver Safety,” as part of their weekly “Your Caregiving Journey” podcast series.  Geri R. Hall, PhD, ARNP, GCNS-BC, FAAN, addressed the topic of anger, aggression and caregiver safety in a 30 minute Q&A format.  You can listen to the podcast here:

www.caregiving.com/2016/08/thursday-at-2-p-m-et-talking-ftd-with-geri/

Although the discussion is entirely in the context of caring for someone with frontotemporal dementia, some points are worth remembering for anyone potentially dealing with aggression as a symptom of cognitive impairment or dementia.

There are medications that can help control aggression, and should be sought from your neurologist at the first sign of regularly occurring verbal aggression (3 times weekly).  These medications should be adjusted or increased at the first sign of physical aggression.

People with cognitive impairment or dementia will often indicate when they are becoming overwhelmed by their current activity by asking to leave or commenting on noise, etc. before they become agitated or aggressive.  Try to tune into those comments to avoid getting to the point of agitation or aggression.  If they do get to that point, help them leave immediately.

If a person does become agitated or aggressive, best practice is to apologize for whatever they are upset about, agree with their point of view and promise to resolve things to their liking as soon as possible so they don’t see you as opposition, but as being on their side, so aggression is not directed at you.

If aggression does not subside, or escalates, put a barrier between you and them, and call 911 for assistance.   Dr. Hall says arriving uniforms are usually comforting.  EMTs will take the person to the ER where urinary tract infection, etc. will be ruled out before admitting for medication adjustment to control aggressive outbursts.

Agitation or aggression can occur without current stimulation.  Dr. Hall recommends looking at changes in the usual routine over the past 24 hours, including visitors, a noisy or chaotic environment, even TV shows like news broadcasts, aggressive talk shows, and CSI or Law & Order genre programming.  Essentially overstimulation leading to fatigue can cause behavior changes.

If you are living with someone who is physically aggressive, you should sleep apart from them in a room with a locked door and alternate egress (e.g. a window).

Don’t blame yourself if a loved one with dementia becomes verbally abusive or physically aggressive.  It is a symptom of their disease process.  Often the behavior change is the result of a delusion, which is a fixed, false belief about which they cannot be dissuaded.

“The thing that caregivers fear most”

Catherine, a member of our local support group whose husband had corticobasal degeneration, forwarded this recent Huffington Post article as it really hit home for her.  The article discusses the difficulties  caregivers experience as their loved one becomes increasingly ill, as  time becomes short, and doubts appear about the caregiver’s ability to manage everything.

Steven Russell, Brain Support Network’s treasurer, read over the article and shared his comments:

As my father’s primary caregiver for the last six years of his life, I remember how many times the ideas expressed by the author came to the surface as anger, fear, resentment and frustration.  Here are the key ideas from this article that resonated with me.

#1 Actually, it is when you realize the possibly long-term nature of the care that you begin to question your abilities.

“But as any caregiver who is being honest will tell you, the scariest part is not when defeat starts to creep in around the edges. It’s when it doesn’t and you start asking yourself ‘how much longer can I do this?’ It’s the status quo and the possibility that this is my new normal that destroys me.”

#2 You think you are at a “plateau” and then the bottom drops out.

“Once you step on the medical treadmill, there is no way to slow the damn thing down.”

#3 All caregivers have these feelings.

“Ask any caregiver and they’ll tell you we are the invisible patients, the ones whose needs are neglected, whose pain goes untreated, whose job it is to be cheerful and keep the family train running on time while we die a little more inside each day.”

#4 And if only those we care for could “try harder to get well, try harder to appreciate us, try harder to understand that our best may not be enough but it remains our best.”

Relying on friends, family and community support (like our caregiver support group) can help you focus on your needs as well — something that is vital for both you and the person you are caring for. You needn’t experience these feelings alone.

Here’s a link to the article:

www.huffingtonpost.com/entry/this-is-the-one-thing-most-caregivers-fear-most_us_57bb3c41e4b0b51733a4ef4d

This is the thing that caregivers fear most
The worst part is not when defeat starts to creep in around the edges.
Huffington Post
by Ann Brenoff
August 25, 2016

Steven

“Tough Love: Succeeding as a spousal caregiver”

Dorothy, whose husband had Lewy Body Dementia and is part of our local support group, forwarded this article on caregiving for a spouse from the current issue of Neurology Now.

Steven Russell, Brain Support Network’s treasurer, read over the article and provides a summary of the key points.

Although the title includes “spousal caregiver,” I think much of it applies to those who aren’t married as well as to those who are providing care and support as an adult child, friend, etc.  Although not focused on caregiving for someone with an atypical parkinsonism disorder, the article makes excellent points for anyone caring for someone with a chronic disease.

Here are some key points:

#1 Men and women have very different reactions as patients and caregivers and this can lead to big changes in relationships:

“Men are more likely to leave the marriage if they become a caregiver because they feel there is little they can get back from the relationship…  [Women] were six times more likely to be separated or divorced after a diagnosis than men in the same situation.”

#2 Get help early and continuously add to your care team:

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone.”

#3 Roles will change, whatever the relationship at time of diagnosis.  Figure out what needs to be done and have resources available:

“Both spouses need to come to terms with the change, accept it, and get help if the change is too much to handle.”

The author provides these tips for the caregiver navigating challenges:
* Prepare for change
* Reassess roles
* Resist taking on everything
* Avoid isolation
* Cultivate healthy communication
* Be open to intimacy
* Guard against depression
* Ask for help
* Carve out “me” time

Check out the article for details on each of these tips:

journals.lww.com/neurologynow/Fulltext/2016/12040/Tough_Love__Succeeding_as_a_spousal_caregiver.14.aspx

Tough Love: Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner
Neurology Now
by Paul Wynn
August/September 2016, Vol. 12, Issue 4

Neurology Now magazine is available by free subscription.  Click on the “Subscribe Now” link at the bottom of the article on caregiving.  You have to verify each year that you still want the magazine.

Steven

Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast

Join in this Parkinson’s caregivers summit on Monday, September 19th, 9am to 3:30pm PT via webcast.  Only the CareMAP part of the agenda is obviously Parkinson’s-specific, so I believe most of the summit will be of interest to those in the Brain Support Network community.

The World Parkinson’s Congress will start in Portland on September 20th.  The day before the WPC, the National Parkinson Foundation (NPF) is hosting a PD caregivers summit in Portland, from 9am to 3:30pm.  NPF aims to have caregivers “share experiences and everyday strategies for coping with the complex problems that arise as a result of PD.”

Anyone can participate in the summit via webcast.  During the webcast, there will be two one-hour gaps during which break-out sessions are held.

REGISTER

Register here for the webcast:

www.parkinson.yourbrandlive.com/c/summit

AGENDA

9:00 – 9:20 am
Welcome
Susan Imke, FNP, GNP-C, Kane Hall Barry Neurology (Bedford, TX)

9:20 – 10:00 am
Maintaining Dignity and Identity
Susan Hedlund, MSW, LCSW, Oregon Health & Science University (Portland, OR)

10:00 – 10:40 am
Caregiving: The Emotional Rollercoaster
Jan and Seale, poet caregiver advocate (McAllen, TX)

10:40 – 10:50 am
Coping Strategy: Yoga & Stretching
Kaitlyn Roland, PhD, University of Victoria (British Columbia, Canada)

10:50 – 11:05 am
Break

11:05 – 12:00 pm
Breakout 1 (to be announced soon)

12:00 – 12:50 pm
Lunch and Networking

12:50 – 1:05 pm
Tools for Family Caregivers: CareMAP and Caring & Coping
Vaughn Edelson, National Parkinson Foundation (Miami, FL)

1:05 – 1:15 pm
Break

1:15 – 2:10 pm
Breakout 2 (to be announced soon)

2:10 – 2:20 pm
Break

2:20 – 2:30 pm
Coping Strategy: Mindfulness
Paula Wiener, MSW, LCSW, National Parkinson Foundation (Chicago, IL)

2:30 – 3:30 pm
Embracing the Challenge: A Panel Discussion
Moderator: Tony Borcich, LCSW, Parkinson’s Resources of Oregon (Portland, OR)
Julie Beck, spouse of person with young-onset Parkinson’s (Chicago, IL)
Rick Bentley, adult child of person with Parkinson’s (San Francisco, CA)
Pat Smith, spouse of person with Parkinson’s (Canandaigua, NY)