Caregiving resources for advanced Parkinson’s (from NPF)

We recently stumbled across the National Parkinson Foundation’s CareMAP resources at caremap.parkinson.org.  CareMAP stands for Care in Managing Advanced Parkinson’s.  “Advanced PD” is when a person with Parkinson’s Disease (PD) is no longer physically independent.  Of course all of the Brain Support Network disorders — LBD, PSP, MSA, and CBD — have many similarities with advanced PD.

BSN volunteer Denise Dagan evaluated the CareMAP resources and finds lots to recommend:
* website – caremap.parkinson.org
* worksheets from the website – caremap.parkinson.org/worksheets
* “Caring and Coping” booklet

Take it away Denise…

In 2014 the National Parkinson Foundation (NPF) launched CareMAP [Care in Managing Advanced Parkinson’s] but it didn’t seem to make a big splash at the time.  Maybe that’s because you can’t find it from the NPF website unless you know where to search.  Now that it has come to my attention I want to share with you that it is a well thought out, practical, comprehensive and user friendly resource.

It does a very good job of its intended purpose, which is to provide “practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease (PD).”  CareMAP describes advanced PD as the point when a person with Parkinson’s is no longer physically independent.  They have “serious problems with mobility and cannot complete activities of daily living by himself or herself. Cognition changes, specifically dementia, are also a hallmark of advanced PD.”

NPF calls the tone of CareMAP a ‘dynamic format,’ but I found the gentle, well paced, matter of fact videos (found only in the Home Care area) to be like inviting a very experienced care specialist into my home for personal instruction.  The video streaming functioned well for me.  I could stop, replay, or skip forward with no waiting for the videos to load.  Videos are available in Spanish and easy to find from the ‘Espanol’ tab on every page.

Here are some excerpts from the original press release describing the site’s purpose and structure:

“Using a dynamic format combining videos and articles, the CareMAP website, caremap.parkinson.org,  explores the key elements of Parkinson’s care. Since the disease progress slowly, with caregivers gradually taking on more responsibilities over time, the site gives caregivers—family members, friends, volunteers or paid professionals—the tools and resources they need to successfully transition from one stage of caregiving to the next.”

“The website is organized into six key areas: Home Care, Outside Help, Caring from Afar, Caring for You, End of Life and Resources. Visitors can explore the topics that are relevant to them at any particular time in their caregiving journey.”

“How-to videos offer practical tips and messages about responding to everyday challenges, such as helping someone get out of bed or get dressed.  Interviews with caregivers showcase their unique stories about how the disease has affected them.”

The more I explored CareMAP, the more useful information I found, not only in the videos and articles in the main body of each page, but in the margins.  Each video and article page has blue boxes along the right side of the screen with, “More in This Category,” and “Related Information.”  Links under these headings take you to more videos and articles, tip sheets, webcasts, worksheets, online brochures, CareZone, Caregivers Forum, etc.  The resources seem endless.

There is even a free comprehensive companion workbook, “Caring and Coping,” available to either order by mail, or download in PDF format at:

https://secure3.convio.net/prkorg/site/Ecommerce/1622547691?VIEW_PRODUCT=true&product_id=1061&store_id=2162

This workbook is designed “to help family caregivers organize all the information they will both receive and generate over the course of their loved one’s Parkinson’s journey. The workbook addresses caregiving questions and concerns from diagnosis through end-of-life care, making it a useful tool for people at any stage of caregiving.”

The workbook includes both ’Tip sheets’ with practical pointers from every day care to travel concerns, and ‘Worksheets’ that “help you keep important information organized and easily located.  There are worksheets to prepare for medical appointments, keep track of medications on a scheduling sheet, a symptoms diary, even worksheets for interviewing and training hired caregivers.”

Worksheets can be printed from:  caremap.parkinson.org/worksheets

CareMAP (or parts of it) is definitely worth bookmarking, and I highly recommend taking a look at the companion workbook, as well.

– Denise

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

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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.