General excerpts from curriculum on dementia for healthcare professionals

Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Here’s a link to the curriculum:

Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)
bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum

Included are excerpts on:
* diagnosing dementia and the value of early diagnosis
* general strategies for managing behavioral and psychological symptoms
* managing apathy
* treating sleep disorders
* home safety considerations
* hospice care

Robin

————————

Diagnosing Dementia (Module 2)

Key Take-home Messages
* There are several brief validated tests that can detect dementia.
* Dementia is a group of symptoms and not a part of normal aging.
* Dementia is caused by many diseases and conditions affecting the brain. The most common type of dementia is Alzheimer’s disease, followed by vascular dementia, dementia with Lewy bodies, Parkinson’s disease dementia, frontotemporal degeneration, and mixed dementia.
* Early diagnosis of dementia and its underlying causes allows for appropriate medical management, access to resources and clinical trials, and future planning with input from the persons living with dementia (PLwD).
* Use of biomarkers for Alzheimer’s disease is an emerging field – brain amyloid PET scans are available with FDA-approved radioactive tracers.

Value of Early Detection and Diagnosis
* Diagnosis of dementia is life changing.
* Early detection and diagnosis affords many benefits to PLwD and their care partners:
– Involves PLwD in decision-making
– Can help preserve functioning
– Allows optimization of other medical conditions
– Allows for long-term care planning
– Allows for development of interprofessional care team (Johnson et al., 2013)
* Need to balance benefits of routine screening of asymptomatic patients and early detection against costs of routine screening and early diagnosis.
* Currently, there is insufficient evidence as to the benefits or harms associated with routine screening for cognitive impairment in older adults.
* Early cognitive impairment may have treatable components.
* Medicare covers a free Annual Wellness Visit for every beneficiary.

When to Consider Dementia in a Differential Diagnosis
* Dementia is an umbrella term encompassing many symptoms that together interfere with daily functioning.
* Dementia often is undetected in primary care setting.
* PLwD may not be aware of or raise issues regarding cognitive impairments.
* Dementia should be considered part of differential diagnosis if:
– Symptoms of memory difficulty interfere with daily functioning.
– Unexplained functional decline or new onset psychiatric symptoms are evident.
– Personal hygiene deteriorates.
– There is sudden difficulty adhering to a medication regimen.

Treatable Conditions Causing Cognitive Impairment
* Many treatable conditions can cause cognitive impairment.
* 3D’s of geriatric psychiatry: Dementia, delirium, depression.
* Others:
– Vitamin deficiencies
– Endocrine disorders
– Infections
– Diseases
– Drug/alcohol abuse
– Sleep disorders
– Brain tumors/lesions

 

Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)

General Strategies for Managing Behavioral and Psychological Symptoms of Dementia (BPSD)
* Patient engagement: contributes to greater sense of well-being
* Physical activity: can improve cognitive thinking, physical fitness, and mood; promising evidence that physical activity programs may improve ability to perform activities of daily living
* Communication: allow person living with dementia sufficient time to respond; use simple commands; use a calm voice; avoid harsh tones and negative words; offer no more than two simple choices; help person find appropriate words for self-expression; lightly touch the person to provide reassurance if upset
* Cognitive stimulation: evidence of some benefit to persons with early- to middle-stage dementia; stimulate thinking, concentration, and memory in social settings. Reminiscence therapy.
* Sensory stimulation: music therapy; white noise; art/craft therapy; bright light therapy
* Environmental changes: remove clutter; use labels and visual cues (signs, arrows pointing to bathroom)
* Task simplification: break tasks into simple sets; use cues (verbal, tactile) or prompts at each stage; create structured daily routines.
* Other interventions being investigated include animal-assisted therapies, massage, reflexology, herbal supplements, etc.

Managing Memory Impairments and Executive Dysfunction
* Provide cues or prompts.
* Address repetitive questioning:
– Respond with calm reassuring voice.
– Use calming touch for reassurance.
– Structure with daily routines.
– Use distraction and meaningful activities.
– Inform patient of events only as they occur.
* Address difficulties with IADLs.

Mood Disturbances: Addressing Apathy
* Apathy is a common behavioral disturbance in all types of dementia, across all stages of dementia. Apathy is commonly reported by family members and worsens over time. Prevalence increases with increasing cognitive impairment. Prevalence differs across different dementias. It contributes to poor quality of life for PLwD (persons living with dementia) and care partners.
* It is distinct from depression and does not necessarily coexist with other mood disturbances.
* Nonpharmacological management may reduce apathy:
– Engaging the person living with dementia
– Activity
– Sensory stimulation
– Environmental changes

Providing Support to the Care Partner
* Help the care partner recognize when the person living with dementia has an unmet need. What is the relationship of the PLwD (person living with dementia) to the care partner?
* Zero in on troubling behaviors of the PLwD. What is the behavior that concerns the care partner and what is it related to? Does the behavior need to change or can the care partner live with it? If it needs to change, what can be done?
* Utilize care partner strengths to see how many potential solutions can be found.
* Help the care partner recognize the importance of self-care.

Addressing Care Partner Issues
* Care partner roles depend on stage and type of dementia and where the PLwD resides (home or institutional setting).
– Early-stage dementia: Care partners provide assistance with transportation and housekeeping.
– Middle-stage dementia: Care partners continue to aid and assist with mobility, ADLs, and protection/safety.
– Late-stage dementia: Care partners provide personal care of the PLwD and decision-making.
* Caring for PLwD, though rewarding and gratifying, can be stressful and difficult; caregiving responsibilities are increasingly time-consuming. Care partner requires support, education, guidance in providing appropriate care for PLwD as well as self. Interprofessional team can provide education, identify support services to ensure care partner’s needs are recognized and addressed.

 

Understanding the Middle Stage of Dementia for the Interprofessional Team (Module 6)

Behavioral and Psychological Symptoms of Dementia (BPSD)
* Common symptoms include mood disorders, sleep disorders, psychotic symptoms, and agitation.
* These are predominantly caused by progressive damage to brain.

The DICE (describe, investigate, create, evaluate) Approach
(see slides)

Treating Sleep Disorders in Dementia
* Nonpharmacologic interventions:
– Sleep hygiene
– Sleep restriction therapy
– Cognitive behavioral therapy
– Light therapy
– Continuous positive airway pressure therapy (CPAP) for sleep apnea (OSA)
* Melatonin/melatonin agonists
* Medications (especially sedative-hypnotics or antipsychotics) can have significant adverse effects.

Home Safety Concerns
* Care partner and dementia care team need to assess safety of the PLwD in the home throughout course of dementia. Problems can arise during early-stage and become more pronounced and possibly dangerous during middle-stage dementia.
– Is PLwD able to continue living at home in middle-stage dementia?
– Is PLwD able to be left alone?
– What needs to be done if the answers are NO?
* Home assessments focus on fall prevention, bathing/toileting safety, kitchen and laundry-room safety.
* Strategies for eliminating fall hazards include keeping floors dry and removing tripping hazards, like small toys or animals.
* Other accommodations include use of alarm bells and safety mechanisms on windows, doors and appliances, monitors.
* Guns and ammunition should be secured separately.

 

Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)

Key Take-Home Messages
* Persons living with late-stage dementia should be considered candidates for hospice care.
* Hospice care is a Medicare benefit that requires forsaking active aggressive therapeutic treatment.
* As dementia progresses and quality of life decreases, the value placed on living longer by the person may change.

Manifestations of End-Stage Dementia
* Dementias are progressive, incurable illnesses.
* Persons living with most types of end-stage dementia have profound memory deficits, minimal verbal abilities, cannot ambulate, are incontinent, and are dependent on others for activities of daily living (ADLs). These manifestations of end-stage dementia are similar for persons diagnosed with Alzheimer’s disease, Lewy body dementias, or vascular dementias. Persons living with some forms of end-stage frontotemporal degeneration (FTD) have similar signs and symptoms but a faster progression to death.
* The most common clinical complications associated with advanced dementia are eating problems, febrile episodes (fevers), and aspiration pneumonia.
* Risk factors for a faster decline include greater functional disability, extrapyramidal symptoms, a history of falls, arterial coronary disease, stroke, and urinary incontinence.
* PLwD (people living with dementia) should undergo more frequent monitoring during the end stage, especially if they are on medications.

End-of-Life Goals
* End-of-life goals may differ for PLwD vs. care partners.
* Goals may be curative or comfort-based.
* It is important to educate all about terminal nature of dementia.
* End-of-life goals for PLwD encompass many issues.
* Need to perform risk/benefit analysis regarding value of hospitalizations in end-stage dementia.

Behavioral and Psychological Symptoms of End-Stage Dementia
* Behavioral and psychological symptoms of dementia may become more prominent in advanced dementia.
* New onset or acute behavioral problems are usually indicative of a new problem.
* Agitation requires prompt attention and evaluation; management should begin with nonpharmacologic interventions.
* PLwD should be assessed for sleep problems, delirium, and pain.

Distinguishing Palliative Care from Hospice Care
(good slide)

Role of PEG Feeding Tubes in Advanced Dementia
(good slide)

When to Consider Hospice Care
* Hospice criteria for dementia are based on progression of Alzheimer’s disease.
* There are many signs and symptoms of end-stage dementia that suggest consideration of hospice.
* PLwD who cannot walk, bathe, or dress independently may be closer to hospice enrollment.

 

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:

www.philly.com/philly/health/health-news/mom-i-didnt-steal-coping-when-dementia-turns-to-delusion-alzheimers-psychosis-depression-20170709.html

Health
‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer

Robin

 

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

“My caregiving is wearing me out. What can I do?”

This is a post from last year about dealing with caregiver burnout.  Suggestions shared include:
* ask for help
* eat healthy foods
* increase exercise
* have a good attitude
* stay connected to your support system
* understand your strengths and weaknesses
* be proactive

The post is from the Benchmark Blog, which is a blog run by Benchmark Senior Living, senior living communities in the northeast.  See the blog post below.

Robin


www.benchmarkseniorliving.com/news-room/dear-jayne-my-caregiving-is-wearing-me-out-what-can-i-do

“Dear Jayne, My caregiving is wearing me out. What can I do?”
October 15, 2016
by Jayne Sallerson, 20 year veteran in senior care
Benchmark Blog

Dear Jayne
I love my mom dearly but some days can be such a challenge. She has Alzheimer’s, and I’m afraid of the toll it’s taking on my health, my family, on everything! What can I do?

~~~~~

It’s not easy, we understand. When every day can be so different, it’s natural for a caregiver to take a back seat to their loved one and put themselves second.

The truth is, caregiving can be tough work. The emotional and physical demands involved can strain even the most resilient person. But you need to take care of yourself. After all, the healthier a caregiver is the better able they are to support others.

“You can do just about anything as a caregiver, but you can’t do everything,” Galyn Corneby advises. Galyn speaks from experience—she is a long-time Benchmark associate and winner of our 2016 Compassionate Caregiver Award. She shared a few of her tips.

“It’s ok to ask for help when you need it.” Everyone needs help sometimes. It can be as simple as having someone help pick up the groceries, make a meal, or stop by for a visit.

“Eat good, healthy foods.” Avoid grab-and-go mealtimes. If you’re going to build resiliency, good nutrition is one of the keys. Try to eat foods that have a lot of vitamins and minerals in them, such as fruits, vegetables, whole grains and low-or nonfat dairy. Our VP of Dining Experience Guy Hemond, who is also an award-winning chef, suggests these few fast and healthy snacks (benchmarkseniorliving.com/news-room?article=recipe-of-the-month-fudgy-fruit)

“Up your exercise.” What? Who has time!?! But here at Benchmark, we like to call it ‘Multi-tasking Fitness’. While sitting at your desk or paying bills, put a workout band around your knees or ankles and work out your legs and hips! One of our associates actually does leg lifts and crunches while lying in bed watching the evening news. Our compassionate caregiver Gail Corneby told me she takes mini exercise breaks during her day. Me? I put appointments on my calendar to exercise—with myself!

Having a good attitude, staying connected to your support system, understanding your strengths and weaknesses, and being proactive are just a few of the ways you can take better care of yourself. It’s largely about recognizing that you do have choices, and the importance of making the ones most likely to support you in your caregiving role.

Let me give you two more places to turn. Our website (benchmarkseniorliving.com) and blog (benchmarkseniorliving.com/news-room) have some great articles on caregiving. Be sure to also check out the Alzheimer’s Association website (alz.org) and their tip sheet on “Important Self-Care for Alzheimer’s Caregivers.”

Until next time,
Jayne

 

“Dying Words” (beautiful story from WBUR, June 13, 2017)

This is a beautiful story about words and an idea for those of us who have loved ones losing the ability to speak.

Alice Saunders had a close relationship with her father Arpiar Saunders.  When Alice was in her 20s, her father started mixing up words — pina colada for pinata, for example.  He was diagnosed with frontotemporal degeneration, which can affect speech.  “As his vocabulary shrank, Arpy would endlessly repeat the words he still had.”  Eventually, “there were just two full phrases that her father could still say.  One was ‘proud to be your dad,’ and the other was ‘I love you.'”  Alice said:  “I’d get voicemails sometimes that was just like, ‘I love you, I love you, I love you, I love you, I love you’ for five minutes straight. That’s what he could say at the end.”  After her father died, Alice’s boyfriend gave her a flash drive of all of her father’s voicemails over the last year.

Perhaps those of us who have loved ones losing the ability to speak can find an idea here — record your family member speaking before their voice disappears.  I have a few hand-written notes from my father that he made before he lost the ability to write; those are very precious to me.

The full article is available online.  Plus there’s a six-minute audio story that aired on June 13, 2017 on WBUR (Boston) at the link:

www.wbur.org/kindworld/2017/06/13/kind-world-39-dying-words

Kind World #39: Dying Words
June 13, 2017
WBUR
by Erika Lantz

Robin

NYT story about adjusting to neurological decline

Though this New York Times article is about a former baseball pitcher Jim Bouton with cerebral amyloid angiopathy (a type of dementia), I think the article is of general interest.  The end of the article is about the wife and family identifying what the husband can still do, and adjusting around that.  This applies to all of us coping with neurological decline.

Here’s an excerpt:

His wife Paula “Kurman calls his condition a pothole syndrome: Things will seem smooth, his wit and vocabulary intact, and then there will be a sudden, unforeseen gap in his reasoning, or a concept he cannot quite grasp.  … In her work with brain-damaged children, Kurman said, her boss would tell her to think about what remains, not what is lost. It is a lesson she applies now. Her husband can still make her laugh, still make her think. … And he can still pitch.  ‘You need to learn that the person is still that person, and you have to focus more on what he can do, rather than what he can’t do,’ she said. ‘And then you adjust.'”

Here’s a link to the full article:

Robin

“Dementia patients may die sooner if family caregivers are mentally stressed”

This news article is a description of UC Berkeley research into the “high stakes of caregiver stress.”

According to researchers, “[patients] with dementia may actually die sooner if their family caregivers are mentally stressed. … [Compared] to patients who were cared for by relatives in fairly good mental health, patients tended by family members in poor mental health died, on average, about 14 months sooner.”

“While the study does not provide definitive causal or directional evidence for the earlier death of patients whose caregivers are in poor mental health, ‘it highlights the mutual influence both parties’ mental and physical states have on one another, and the extraordinarily high stakes that are involved,'” the lead researcher said.

“The study notes that poor mental health in caregivers can affect patients’ lives in a variety of ways. It can reduce the quality of patient care by raising the risk of neglect or abuse, weaken the patients’ immune systems by compromising social bonds between the caregiver and patient, or transmit negative emotions directly to patients through a phenomenon known as emotion contagion, in which one person in a relationship absorbs the emotional responses of the other.”

Mental health issues include depression, anxiety, social isolation and frustration.

The full article can be found here:

news.berkeley.edu/2017/06/26/caregiver-mentalstress/

Mind & Body, Research, Science & Environment
Dementia patients may die sooner if family caregivers are mentally stressed
By Yasmin Anwar, Media Relations
Berkeley News
June 26, 2017

 

Robin

 

“What to Do When Loved Ones Won’t Admit Their Memory Loss” (WSJ)

This post may be of interest to those dealing with dementia and the person with dementia refuses to see a doctor or is unable to see his/her own dementia.

The Wall Street Journal (wsj.com) isn’t a newspaper I often read but I do like the articles written by Dr. Marc Agronin, a geriatric psychiatrist. This article in last week’s paper is about what “to do when loved ones won’t admit their memory loss.”

Here’s a short excerpt:

“This denial of illness itself is a telltale sign of an evolving dementia such as Alzheimer’s disease, in which a person’s insight is often an early casualty. Anosognosia is the formal medical term for this condition, and it is also seen after certain types of strokes. It can also be fueled by delusional thinking, depression, mania, or the effects of medications or other substances. Such denial can lead to physical, mental, financial or legal harm when these individuals with diminished or distorted capabilities refuse necessary evaluations and treatments, or insist on managing their own finances or engaging in risky behaviors such as driving.”

Here’s a link to the full article:

blogs.wsj.com/experts/2017/06/29/what-to-do-when-loved-ones-wont-admit-their-memory-loss/

The Experts | Health
What to Do When Loved Ones Won’t Admit Their Memory Loss
By Marc Agronin
Jun 29, 2017 10:30 am ET
The Wall Street Journal

Robin

“Understanding Dementia” – online course begins July 24th

“Understanding Dementia” is an online university course about the latest in dementia research and care. This free 9-week course begins July 24th, 2017, and is open to anyone. It’s offered by the University of Tasmania (Australia). There’s no info as to what types of dementia will be covered. Presumably the course will include at least the big four dementias – Alzheimer’s, vascular, Lewy body, and frontotemporal. Enrollment ends on August 18th. See:

mooc.utas.edu.au/courses/understanding-dementia-2017-06

If anyone attends, please take notes and share what you’ve learned!

Robin

 

Those with neurological disorder have suggestions for family and friends

Though this blog post is written by people with Lewy Body Dementia, very little of this is specific to LBD, which is why I’m sharing it on our blog. Whenever you read “LBD” or “Lewy body dementia,” just replace it with the disorder you are dealing.

Last year, an Ann Arbor support group for those with an LBD diagnosis created a list of things to keep in mind when you have a family member or friend with LBD.  These are suggestions of what families and friends “can do and don’t do.”  The list includes items such as:

* give me some slack
* don’t hover
* let me make a mistake

The list is posted to the University of Michigan Health Blogs.  I’ve copied most of the blog post below.

Robin

—————–

uofmhealthblogs.org/neurohealth/when-someone-you-have-has-lewy-body-dementia/28231/

When you love someone with Lewy Body Dementia
Suggestions for family and friends from people with LBD
Posted by Members of the Ann Arbor Support Group on April 22, 2016
University of Michigan Health Blogs

Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.

It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.

I have Lewy Body Dementia (LBD). Please . . .

Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.

Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.

Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.

Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.

Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.

Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.

If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.

Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?

Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.

A few of the things we appreciate

This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.

I like it when . . .

You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.

You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.

We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.

You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.

A final note for caregivers

Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.

This list is not comprehensive

It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”

Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.