Category Archives: Caregiving – Dementia

Here’s a good article in the Toronto Star newspaper about delirium.  Key points in the article include:

* “Delirium can be a symptom of a chronic illness or metabolic imbalance.”

* “The signs and symptoms of a delirium mimic dementia symptoms, so your role (as a family member) is critical in explaining the individual’s baseline function” when you are in the hospital.

* “[Having] dementia, Parkinson’s disease or suffering a stroke can predispose you to delirium, as can being elderly, or having had an incident of delirium in the past.”

* “It can have a particularly negative impact on a vulnerable brain, impairing the brain’s ability to receive or send out signals.”

* “Some common triggers for delirium include fever, acute infection (like a flu), urinary tract infection, a toxin, sleep deprivation, or anesthesia. Certain drugs for asthma, Parkinson’s, pain and low oxygen can also be culprits.”

Here’s a link to the article:

www.thestar.com/life/health_wellness/nutrition/2017/02/13/how-delirium-can-be-different-than-dementia-caregiver-sos.html

How delirium can be different than dementia: Caregiver SOS
Delirium can happen to those who suffer from dementia, but it can also indicate other medical issues.
By Nira Rittenberg
Toronto Star
Mon., Feb. 13, 2017

Robin

The Association for Frontotemporal Degeneration (AFTD, theaftd.org) hosted a webinar for FTD caregivers called the “Care Paradigm.”  The speaker at the January 12, 2017 webinar was Alvin Holm, MD, Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota.  I heard Dr. Holm present his care paradigm at the AFTD conference last year; I thought it was worthwhile to think about one’s journey with neurological decline within the paradigm.  The goal is to improve qualify of life through an integrated, comprehensive approach to care and treatment.

Fortunately, Brain Support Network volunteer Denise Dagan was willing to watch the 90-minute webinar.  Though the webinar was focused on frontotemporal degeneration, Denise’s found the information applicable to any neurological disorder.  Her notes are below.  (There’s nothing FTD-specific in her notes.)

Should you be interested in watching the webinar, here’s the link on YouTube:

www.youtube.com/watch?v=6CVAAkOg3hE

A Care Paradigm for Persons with FTD
AFTD Webinar, January 12, 2017
Speaker: Alvin Holm, MD
90 minutes

I’ve also previously posted to the Brain Support Network blog the ten takeaways from the webinar from the point of view of an FTD caregiver.  See:

www.brainsupportnetwork.org/care-paradigm-aftd-webinar-takeaways/

Denise’s notes are below.

Robin

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Denise’s Notes on
A Care Paradigm for Persons with FTD
AFTD Webinar, January 12, 2017

I recently watched a very good webinar about the “Care Paradigm.”  The idea is to pull together a caregiving team with a plan to address, not only the symptoms of the disorder, but the whole person.  In this video, the disorder is frontotemporal degeneration, but the concept holds for Parkinson’s Disease (PD), Alzheimer’s, Dementia with Lewy Bodies, and others.

These are the basics…..

“The Care Paradigm is a process that is forged over time in response to how the patient progresses and responds to treatment options,” said Dr. Alvin Holm.

It takes into consideration the primary diagnosis, any secondary diagnoses, and a person’s overall physical and emotional health.

It does not prescribe treatments the patient and/or caregiver cannot, reasonably, carry out, but takes into consideration what is realistically possible.  This may require patients and caregivers to ask questions and speak up if what they’re being asked to do is not feasible for any reason.

The flip side is that the healthcare team cannot address what they do not know about.  So, patients and caregivers should not feel it is complaining to inquire about symptoms affecting quality of life.  Relief from those symptoms need not be overkill.  Sometimes, education and changes to old habits, physical therapy, or other non-invasive methods can bring relief.  If not, be persistent, and inquire about stronger measures.

The whole purpose of the care paradigm is to maximize quality of life by recognizing that wellness management and environmental support are part of the treatment plan.  It is the interaction of these three areas of treatment, not just disease specific therapies.

Definitions:
“Disease Specific Therapies” = FDA-approved medications.  Specific to Parkinson’s, these should be a structured medication schedule, not only to minimize ‘off’ periods, but to maximize observable patterns that will help your neurologist adjust medications, as necessary.

“Environmental Support” = a safe environment.  Specific to Parkinson’s [and the atypical parkinsonism disorders], remove tripping hazards, install grab bars, etc.   In cases of dementia, or delusions, the environment should also not be more demanding than the patient can cope with to minimize agitation.

“Wellness Management” = overall health, diet and exercise, sleep, care of acute illness, and psychological support (treatment of depression, anxiety, apathy, etc.).

I haven’t visited this website, National Caregivers Library (caregiverslibrary.org), in awhile.  Someone on an UK-based online support group recommended it today.  It does have some good checklists.  In 2015, I mentioned their checklist called “Are You Grieving?”

Today, I came across their “Caregiving Guidelines,” which include six important points to keep in mind when providing care to a loved one:

1. Preserve dignity
2. Involve your loved one
3. Promote independence
4. Ask for help
5. Be an advocate
6. Take care of yourself

The short guidelines are copied below.

Robin

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www.caregiverslibrary.org/caregivers-resources/grp-caregiving-basics-topic/caregiving-guidelines-article.aspx

Caregiving Guidelines

Whatever the specifics of your situation, there are some important basic guidelines to remember when you provide care for a loved one:

1. Preserve dignity
2. Involve your loved one
3. Promote independence
4. Ask for help
5. Be an advocate
6. Take care of yourself

1. Preserve Dignity

Respect your loved one’s right to make decisions about his or her life, and help him or her maintain a sense of control and privacy whenever possible.

* Listen to what your loved one has to say, and pay attention to his or her worries and concerns.
* Provide help on your loved one’s terms, not yours. Tasks like dressing and bathing are personal and private.
* Encourage your loved one to retain as much control over his or her life as possible.
* Be understanding. Keep in mind that most people feel frustrated or unfairly burdened at some point.

2. Involve Your Loved One

The ability to make decisions is a basic freedom, so provide choices whenever possible—from where to live to which cereals to eat at breakfast to what to wear. Choices enable us to express ourselves. As your loved one’s options become more limited (through health losses, financial constraints, etc.), you may have to work harder to provide choices.

3. Promote Independence

Caregivers often take over when they shouldn’t. If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, then encourage him or her to do so. Helping your loved one maintain a feeling of independence will make him or her feel better about being in a care-receiving situation.

* Encourage any effort at independence, no matter how small.
* Even if you can do something “quicker and easier” than your loved one, let him or her take care of it if possible.
* Avoid treating your loved one like a child.

4. Ask for Help

Many caregivers are so accustomed to providing help and seeing to another person’s needs that they don’t know how to ask for aid themselves. Take advantage of the help that’s available.

* Your family is your first resource. Spouses, brothers and sisters, children, and other relatives can do a lot to ease your caregiving burden. Let them know what they can and should do.
* Look to your church for aid and counsel. Make your minister or religious leader aware of your situation.
* Turn to caregiving support groups, or support groups for specific illnesses like Alzheimer’s or heart disease.
* Encourage your loved one’s friends and neighbors to provide what comfort they can.

5. Be an Advocate

Keep in mind you are a member of your loved one’s health care team, and that your role is as important, if not more important, that anyone else’s. In many cases, you may be the only one equipped to speak out on your loved one’s behalf or to ask difficult questions.

Chances are that none of the health professionals providing care for your loved one will know every aspect of his or her condition at the start. You may need to help with the exchange of information among physicians.

Prepare your loved one’s Personal Health History and take it with you as you accompany the care recipient to appointments. Make sure your loved one’s doctor is aware of what’s on it.

6. Take Care of Yourself

Providing care while holding down a job, running a household, or parenting can lead to exhaustion. If you do become exhausted or sick, you’re more likely to make bad decisions or take out your frustrations in an unfair way.

* Take advantage of opportunities for respite care.
* Refresh yourself for the “long haul.” Pay attention to what your body tells you.
* Be prepared for many potential lifestyle changes (work schedules, social life, money and resources) and evaluate your readiness.

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