NextStepInCare.org – useful website for care transitions

The “Next Step in Care” website, nextstepincare.org, has been mentioned in many newspaper articles and by many speakers as a good resource.  The site, a program of United Hospital Fund, was “created to make sure transitions in care – moving patients from one setting to another – are safe and smooth because chronically ill patients move frequently between health care settings, and these transitions should be carefully planned and coordinated.”  Adding in-home care is viewed as a “transition in care.”  The site provides guides and checklists for family caregivers and healthcare professionals.

Recently, Brain Support Network volunteer Denise Dagan took a look at the website.  Here’s what she had to say about it.

Robin

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Notes about
Next Step in Care (nextstepincare.org)

According to the website:  “Family caregivers are essential to successful transitions, yet they are often left out of planning and poorly prepared to take on new, complex, and demanding tasks and responsibilities.  Next Step in Care provides practical advice and easy-to-use guides that focus on transitions between hospitals, rehabilitation facilities, nursing homes and home to improve transfer quality and safety, and reduce unnecessary re-hospitalizations.”

I heard a rule of thumb recently from a Stanford doctor who said if a person is readmitted to the hospital within 30 days, that transition to home is considered unsuccessful in his mind.  It could have been better planned and executed.  A properly planned and executed health care transition is less stressful for everybody.  Next Step in Care is wise enough to know that hinges on the family having access to relevant information.

Here are the great things on this website, nextstepincare.org:

1.  You can search the type of transition your family will be dealing with and find Family Caregiver Guides with relevant information.  By the time you read through the recommended Guides for that type of transition, you will be better prepared to participate in the process.

2.  The Family Caregivers Guides are also easy to find from a well organized index.  The index and the Guides are available in English, Spanish, Chinese, and Russian, with text size adjustment!  You can print, email and save to your computer every Guide on the website.  Share them with everyone on your caregiving team, so everyone is better prepared.

3.  The Family Caregiver Guides cover all relevant transition care topics, even LGBT Caregiving.

4.  There is a Video section with instruction for these common caregiving situations:  Medication Management (including Giving Insulin Injections), Dementia & Delirium, and Palliative Care.

– Denise

“How delirium can be different than dementia” (Toronto Star)

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

Talk on aging by Stanford Internist – Notes

Brain Support Network volunteer Denise Dagan attended a talk on Thursday by an internist at Stanford on the topic of “Aging at Home with Chronic Illness.”  Denise joked that there was very little about the “at home” part of the topic.  And I’m not even sure there was much about the “chronic illness” part of the topic.  But there was plenty about aging!

These are the top four things that were interesting to Denise in the talk:

1. Even one day of hospitalization can de-condition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.

2. If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.  Maintaining mobility is crucial to overall health, both physically and emotionally.  It even helps your bowels move.

3. If you have a skin tear in a spot you can’t reach, or that is not healing, use your local wound care center.  Medicare will cover it, but you may need a referral from your doctor.

4. Incontinence can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

All of Denise’s notes are copied below.

The one-hour talk with Bryant Lin, MD, Stanford Internal Medicine, on February 9, 2017 was broadcast live over the web.  The recording will be posted in several few weeks to the Stanford Health Library website, healthlibrary.stanford.edu, along with a summary provided by the librarian.  (The video and summaries are posted to the Stanford Health Library News website, shlnews.org.)

Robin

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Denise’s Notes

Stanford Health Library Talk
Speaker:  Bryant Lin, MD, Stanford Internal Medicine
Date:  February 9, 2017

Last night I attended a short talk presented by the Stanford Health Library.  Dr. Bryant Lin was to discuss Aging at Home with Chronic Illness, although he didn’t emphasis the, ‘at home,’ part.  His talk covered all aspects of aging with particular attention to aging with chronic illness because of the magnifying effects of age associated co-morbidities, like diabetes, high blood pressure, heart disease, etc.

I’ve included all my notes because his talk had all good information, but a few things jumped out at me:

1. Even one day of hospitalization can decondition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.

2. If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.  Maintaining mobility is crucial to overall health, both physically and emotionally.  It even helps your bowels move.

3. If you have a skin tear in a spot you can’t reach, or that is not healing, use your local wound care center.  Medicare will cover it, but you may need a referral from your doctor.

4. Incontinence can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

Here are my full notes:

Mobility:
1 of 4 people over age 65 fall every year, and about 10% of those falls results in significant injury.
Falls increase in frequency due to our aging bodies, medication effects, and disease-related symptoms.

Preventing further falls is primarily addressed with physical therapy (PT) to improve strength & balance, and/or occupational therapy (OT) to do a home safety review, recommend assistive devices (canes, walkers, wheelchairs, lifts, and scooters), or teach about transfers (to/from wheelchair).

There are many types of walkers.  Medicare only covers those supplied by approved vendors, which can be a challenge to find, but they do help you pick the right one and show you how to use it properly.  You should like it well enough to USE it.

Some considerations in getting the right one for you:
– It should not be too heavy to lift and should fit in your car easily.
– Fit your walker properly to your height.  Standing straight, the top of it should be at the bend of your wrist.  You should not be leaning over it.
– Grip factors:  Close the right circumference so you don’t grip too hard. The grip should not slip around on the frame of the walker.

Dr. Lin recommended this slide show by the Mayo Clinic: Tips for choosing and using walkers.  See:  www.mayoclinic.org/healthy-lifestyle/healthy-aging/multimedia/walker/sls-20076469

Activity:
– Consistent activity is key to maintaining mobility.  Whatever activity you will DO, and can do safely, is the right activity for you.
– Even one day of hospitalization can decondition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.
– If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.
– PT can improve strength and get you back to activity.  Medicare covers PT.   Ask if you qualify for in-home PT.

Memory Loss:
– There are several types of dementia, not just Alzheimer’s.
– Doctor may order blood tests to rule out B12 or folate deficiencies that can look like dementia but are fixable.
– Recent study suggests exercise probably reduces risk and/or delays onset.  Brain training is not determined to prevent or delay dementia.  Constant new mental challenges may prevent or delay, but is impossible to research.

Loneliness & Depression:
– Depression increases the risk of morbidity and use of health resources.  Its easy for your doctor to screen for depression.
– Many treatment options are available: cognitive behavior therapy, as well as several medications.
– Social interaction prevents & improves depression.  So, get out there and be social!

Hearing Loss:
– Treatment should start by removing ear wax.
– The only treatment for hearing loss due to aging is hearing aids.  There is still no solution to the noisy restaurant problem.
– Personal sound amplifier is no different from hearing aid, but much cheaper because only licensed audiologists can sell hearing aids.  They work with bluetooth on your cell phone quite well.  Costco sells more hearing aids than any other source.
[Someone at Stanford did solve the noisy restaurant problem w/3 microphones hanging around the neck, but nobody would use it.]

Vision Issues:
Get annual eye exams, especially if you have optical medical issues, like diabetes, cataracts, glaucoma, or macular degeneration.

Skin Issues:
There are several skin issues common in older people, some more serious than others.  (Dry skin, itching, easy bruising, skin tears, benign growths, skin cancers, and pressure ulcers).
– If you have a skin tear in a spot you can’t reach, or that is not healing, make use of your local wound care center.  For Medicare to cover it, you will need a referral if you belong to a medical group.  If not, just call for an appointment.
– Awareness of how to check for pressure ulcers at home increases prevention and early treatment before they become serious.
– Get regular skin checks for benign growths and skin cancers.

Nutrition Issues:
– Unintentional weight loss should be brought to you doctor’s attention.  It could be something serious.
– Medicare may cover nutrition consult.  A customized nutrition plan may be the best course for you.
– Discuss with your doctor whether you need supplements and/or if you are taking the right one(s).
– Choking or gagging can lead to aspiration pneumonia.  Tell your doctor immediately if this is becoming a problem.

Constipation:
Up to 50% of seniors experience this.  It can be due to slow transport through the gut, difficulty expelling stool, or symptoms like irritable bowel syndrome.  Don’t be embarrassed to tell your doctor and get help.  Bowel obstruction can be dangerous.

First line of treatment is a fiber supplement, plenty of fluids, and MOVE!  Physical activity helps stool move through the bowel.
Laxatives and stool softeners are last.
Probiotics don’t directly treat constipation, but may help over time.  They are difficult to study because there are so many beneficial bacteria.  Yogurt doesn’t hurt most people, so give it a try.

Incontinence:
Can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

Screening everyone should have for early treatment of disease:
– Diabetes
– Cancer screenings (colon, breast, cervical, lung if smoker)  What age to stop screening?  Talk with your doctor.
– Cardiovascular – blood pressure, lipids
– Osteoporosis
– Hepatitis C – baby boomers & those at high risk
– HPV/HIV

Preventative measures:
– Immunizations (whooping cough, shingles, two types of pneumonia vaccine, annual flu shots)
– Aspirin – For women it is primary prevention for stroke.  For men it is for heart disease.  (If you’ve already had a stroke or heart attack, taking aspirin would be for secondary prevention.)
– Stop smoking
– Moderate alcohol use.  Discuss with your doctor about alcohol use with your current medications.

Suggestions for Prevention Medication Use Interactions:
– Always bring meds to dr. appt. (really, physically!)  This is Dr. Lin’s preferred procedure.
– Review your medication list with your pharmacist.  That’s what they’re there for.
– Ask your doctor if any of your medications can be stopped.  Fewer medications always reduces medication interactions.
– Keep an up-to-date medication list, including supplements & over-the-counter medications, on your person at all times, in case of emergency.  Good policy, but few people do it.
– Ask your doctor if new medications have adverse affects & interactions with others on your list before taking them.
– Ask about alternative medication options.  Doctors are usually choosing one in a class of drugs, so they can be flexible based on cost, or other factors.

Home Safety:
– Remove fall and tripping hazards
– Install hand rails in bathroom (shower, tub, beside the toilet), and in doorways with a step.
– non-slip surfaces (shower & bathroom floor, especially)
– Use a bedside commode if needed due to balance or mobility issues
– Lower your bed or order a hospital bed
– Check for fire hazards, like gas stove tops, especially for those with cognitive issues in the house.  Install a shut-off valve for a gas stove-top and turn it on only when there is responsible supervision of the appliance.  Get an electric kettle.
– Subscribe to a medic-alert system

Driving:
Aging eventually leads to decreased reaction time, decreased visual acuity and can be complicated by a comorbidity like cognitive decline.  When the risk of injury to oneself and others is apparent, family needs to intervene, especially if there have already been accidents or tickets.  There is driving simulation software so you can self-evaluate.  If someone is unwilling to voluntarily stop driving, you can make an anonymous report to DMV or have the family doctor do it.   See:

CA DMV Potentially Unsafe Driver Form (FFDL10):
www.dmv.ca.gov/portal/dmv/?1dmy&urile=wcm:path:/dmv_content_en/dmv/pubs/brochures/fast_facts/ffdl10

We have Lyft and Uber, but you say you don’t use a smart phone.  Check out GoGoGrandparent.com.  For a small fee they have operators available to hook you up with a Lyft or Uber-type ride.  You must create an account to participate.

Hospitalizations & Transitional Care:
If a person is readmitted to the hospital within 30 days, Dr. Lin would determine their transitional care was probably inadequate.  The person being discharged and their primary care giver should have detailed instructions for care at home, follow up instructions, and all support equipment and services should be in place before discharge.  If not, discharge should be delayed until all is in place and everyone involved understands the plan.

Difficulty with Activities of Daily Living (ADL) and Long Term Care (LTC):
– Home Health is assistance with ADL (bathing, dressing, eating).  Providers have limited nursing capability.  It is usually cash pay or LTC insurance.
– Assisted Living facilities come in a WIDE range of services so be careful.  You can get help in choosing between assisted living or managing home health from a geriatric care manager.  Your clinic may have a social worker available.  Stanford offers Adult Aging Services for help with this kind of decision.

End-of Life planning:
Put in place an advance directive designating your healthcare power of attorney (POA) and/or a POLST (Physician Orders for Life-Sustaining Treatment).  Emergency personnel look for POLSTs for specific instructions on resuscitation, comfort care, intubation, etc.

Having an advance directive with a single medical POA (power of attorney) designated can help family discord.  Dr. Lin has seen conflict in families where the POA had several people designated or where there was no POA and everyone felt they needed to speak their mind.  Best practice:  When you put your advance directive in place, tell your family your wishes, whatever they are.

Resources:
Your primary care physician
The Veteran’s Administration
Medicare Nursing Home Compare
Eldercare.gov
Geriatric Care Manager
AARP

Q&A
Audience comment that there are other things that reduce elder quality of life, like elder abuse and scams targeting the elderly.

Insomnia in the elderly is helped by the same good sleep hygiene techniques that help everybody.
– Don’t ignore cues for sleepiness or nap so much during the day you are awake at night.
– Blue light (computer/phone/tablet screens) at bedtime is stimulating because is doesn’t allow proper production of melatonin, making it harder to fall asleep.

Can a geriatric care manager help with family conflict over best decisions for an elderly person?
Yes, but they are not trained specifically for that.  They would probably call a family meeting and provide information so the family can make the best decision together.

“Care Paradigm” – webinar notes

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…..

careparadigm

“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.).

“8 Extraordinary Things You Need to Know About People With Chronic Illness”

The post is from late November 2016 on The Mighty (themighty.com), a website for those facing “disability, disease and mental illness together.”  It’s titled “8 Extraordinary Things You Need to Know About People With Chronic Illness.”  The eight things include:

1. People with chronic illness have a profound strength to manage life while in pain.

2. People with chronic illness tend to have an astute awareness of other people’s pain.

3. People with chronic illness may have a unique perspective on life.

4. People with chronic illness often don’t tell people when they are struggling.

5. People with chronic illness live a secret life of struggling.

6. People with chronic illness need you to check on them.

7. People with chronic illness can fail to follow through on commitments.

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

The author encourages us to tell the people in our life with chronic illness how much we admire them.

Here’s a link to the post:

themighty.com/2016/11/being-sick-and-how-to-be-supportive/

8 Extraordinary Things You Need to Know About People With Chronic Illness
The Mighty
By Christine Carter
November 29, 2016

Robin