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.

 

PSP and CBS 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. Though the web address includes the term “Alzheimer’s,” frontotemporal dementia is also mentioned in this 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

One of the types of frontotemporal dementia is the “motor type,” which include corticobasal syndrome and progressive supranuclear palsy.

Here are some excerpts on frontotemporal dementia.

Robin

————————–

Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)

Frontotemporal Dementia Types
* There are at least 3 distinctive clinical syndromes, each with heterogeneous neuropathology.
– Progressive behavior/personality decline: behavioral variant FTD (bvFTD)
– Progressive language decline: Primary progressive aphasia (PPA)
– Progressive motor decline: corticobasal syndrome, amyotrophic lateral sclerosis, or [progressive] supranuclear palsy. FTD with progressive motor decline is rare. FTD with progressive motor decline can involve movement problems/slowed movement, muscle rigidity (Parkinsonian symptoms), body stiffness, and changes in behavior or language.
* Behavioral variant FTD (bvFTD) is the most common variant. It is characterized by marked personality changes and changes in social conduct.


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

Early-Stage Frontotemporal Degeneration (FTD): Overview
* FTD is a heterogeneous group of diseases with overlapping clinical symptoms but different causative genes and differing underlying pathologies.
* FTD is caused by damage to frontal and/or temporal lobes. Impairments generally progress quickly but memory often remains intact.
* Persons with FTD demonstrate changes in behavior and personality, language problems, and motor problems.
( Memory impairment is minimal in early stages.


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

When to Consider Hospice Care in Persons with End-Stage FTD
* Persons with end-stage FTD are generally younger and healthier than persons with other types of end-stage dementia.
* As with other dementias, FTD is often not recognized as a terminal diagnosis.
* End-stage FTD may “look different” than other advanced dementias.

 

Lewy body dementia 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. Though the web address includes the term “Alzheimer’s,” Lewy body dementia is well-covered in this 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

Here are some excerpts on Lewy body dementia.

Robin

————————

Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)

LBD Overview: Dementia with Lewy Bodies and Parkinson’s Disease Dementia
* Lewy body dementia (LBD) covers 2 related conditions—dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Timing of dementia onset distinguishes between DLB and PDD.
* Diagnosis of LBD is challenging, even among experts.
* LBD, Parkinson’s disease (PD), and AD have many genetic similarities.
– However, differences in phenotypes have clinical implications.
– Location of Lewy bodies also influences disease manifestations.

LBD: Prevalence and Demographics
* Prevalence estimated at 1.3 million cases of LBD in the United States.
* Reportedly high number of underdiagnosed and frequently misdiagnosed cases.
* Difficult to estimate prevalence of DLB separately from PDD.
* Affects up to 5% of elderly people and up to 30% of all dementia cases.

DLB: Incidence and Prevalence
* Accounts for 4.2% of all community-diagnosed dementia, with incidence of 3.8% of new dementia cases.
* Affects more men than women and increases in incidence with age.
* Affects people at a younger age than does PDD.

PDD: Incidence and Prevalence
* PD affects about 1 million Americans.
* The percentage of people with PDD increases with increasing duration of PD. Approximately 80% of patients with PD will eventually develop PDD.
* 15–20% of persons with PD have MCI, which is associated with a poor quality of life and more severe motor symptoms.
* PD incidence increases with age.
* PD rates differ among different races.
* Incidence of PD is higher in specific ethnicities—Asians, Europeans, North Africans, North and South Americans—but highest among Ashkenazi Jews.

LBD/PDD Risk Factors
* In general, there are few risk factors for LBD: Male, older than age 60, and possible genetic predisposition.
* An important risk factor for PDD is duration of PD. Probability of developing PDD is approximately 80% with extended time since PD diagnosis.
* Other (nonspecific) risk factors for PDD include “atypical” Parkinsonian features, specific medical problems, non-motor symptoms, and rapid eye movement (REM) sleep behavior disorder (RBD).

LBD Symptoms
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Clinical manifestations of DLB and PDD are initially different but become more similar as the disease progresses.
* Comparison of DLB versus AD found some similarities and numerous differences.
* Hallmark symptoms in early-stage PDD are movement related and also include:
– Cognitive impairments
– RBD, visuoperceptual changes, and depression
– However, memory intact throughout most of the stages of PDD.
* Greater impairments are associated with DLB than with PDD.

LBD Progression and Mortality
* The prodromal stage is characterized by dysautonomia, olfactory dysfunction, RBD, and psychiatric symptoms that are apparent years before onset of dementia (possibly decades earlier with DLB).
* Far less is known regarding progression of LBD compared with knowledge on Alzheimer’s disease. The Lewy Body Disease Association (LBDA) estimates an average duration of 5 to 7 years, with a range from 2 to 20 years.
* Survival time is shorter in DLB compared with Alzheimer’s disease.
* Men with DLB have increased mortality versus men with AD.


Diagnosing Dementia (Module 2)

Diagnosing Lewy Body Dementias (LBD)
* LBD syndromes include DLB and PDD. Both are aging-related dementias.
* Major distinction between DLB and PDD is the temporal sequence of appearance of clinical symptoms.
– DLB if dementia within 1 year after Parkinsonian symptoms
– PDD if dementia years after PD diagnosed/Parkinsonian symptoms

Distinguishing Between Lewy Body Dementias (LBD) and Alzheimer’s Disease
* Memory impairment not prominent feature of early LBD.
* Similar manifestations between LBD and late-stage AD
* DLB has similar mean age of onset as AD (around age 68) but PD has earlier onset.
* DLB has more rapid course of progression than AD or other dementias.


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

Early-Stage Lewy Body Dementia (LBD): Overview
* LBD encompasses dementia with Lewy bodies (DLB) and Parkinson’s Disease Dementia (PDD).
* Defining features of LBD include motor Parkinsonism and cognitive impairments .
* DLB and PDD share many clinical and pathological similarities and are sometimes considered as different points on a spectrum.
– PDD is characterized by a period of pure motor symptoms first; cognitive symptoms develop more than a year after onset of movement problems.
– DLB occurs in older adults with Parkinsonism who develop dementia/cognitive symptoms within 1 year of motor symptoms and is often associated with a more severe course than PDD.
* LBD rate of decline is much faster and its survival time is shorter compared with AD.
* Greater impairments are associated with DLB than with PDD.

Early-Stage LBD: Clinical Manifestations
* Marked attentional and executive function disorders are present in LBD with significant cognitive fluctuations.
* Rapid eye movement (REM) behavioral disorder (RBD) is a sleep difficulty predominantly associated with LBD.
* Mild cognitive impairment (MCI) is present at the time of PD diagnosis in about one-third of individuals and in approximately half of all older adults afflicted with nondemented Parkinson’s disease after 5 years.
* Hallucinations are among the most common core features of DLB prior to the initial evaluation, followed by Parkinsonism and cognitive fluctuations.

LBD Versus Alzheimer’s Disease
LBD and Alzheimer’s disease have some similarities and numerous differences. Compared with persons with Alzheimer’s disease, persons with LBD are:
* More likely to have psychiatric symptoms and more functional impairments at time of diagnosis.
* More likely to have sleep disturbances, cognitive fluctuations, well-formed visual hallucinations, and muscle rigidity or Parkinsonian movement problems early in the disease.
* Likely to have pronounced visuospatial impairments in LBD that appear earlier in the disease course.
* More likely to have memory remains intact throughout most of the stages of PDD and LBD.
* More likely to have nonmotor behavioral symptoms.

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.

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

Middle-Stage Lewy Body Dementia (LBD): Including DLB and PDD
* Cognitive deterioration less consistent versus Alzheimer’s disease.
* Manifestations: Impaired thinking; Parkinsonian movement impairments; Visual hallucinations; Deterioration of language skills; Sleep disorders; Behavioral/mood symptoms; Alterations in autonomic body functions

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)

Sleep Disorders: LBD
* Sleep disturbances affect up to 90% persons with LBD.
* REM sleep behavior disorder (RBD): Is suggestive of LBD. Is predictive for neurodegeneration in Parkinson’s disease. May precede dementia and worsen prognosis.
* People with Parkinson’s disease may experience excessive daytime sleepiness.
* People with Parkinson’s disease‒MCI (mild cognitive impairment) have poorer sleep efficiency and more nontremor features of Parkinson’s disease.

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.

Psychotic Symptoms
* Psychotic symptoms: More prevalent in PLwD during the middle-and later stages of dementia.
* Delusions: False beliefs that persist despite consistent evidence to the contrary. Generally simple and nonbizarre.
* Hallucinations: Sensory experiences that cannot be verified by anyone except the person experiencing them.
* Most commonly visual or auditory in dementia.

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

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.

 

Drawing and using a care map (Atlas of Caregiving)

This post is about creating a “care map.”
In November 2016, Brain Support Network volunteer Denise Dagan attended a seminar on developing a care map, according to the Atlas of Caregiving (atlasofcaregiving.com) approach. See those seminar notes here:
The Atlas of Caregiving website has three videos from April 2017 about drawing and using a care map.  A care map is “a hand-drawn representation of a caregiver’s network.  It illustrates the caregiver’s own support system, highlights what is working well, and often reveals duplication or gaps in care and resources.”  You can find the videos here:
The goal of a care map is to help family caregivers improve your daily life.

This might be something worthwhile to do with a geriatric care manager.

Robin

13 ways to practice self-care as a caregiver (CareGiving.com)

This recent blog post on CareGiving.com is about 13 ways for caregivers to practice self-care. These 13 ways include:

1- talk ourselves through incredibly stressful situations
2- spent time with our faith
3- politely correct the health care professionals who offer suggestions that won’t work
4- calmly request help from services and programs
5- forgive those family members and friends who disappear during the toughest times of our lives
6- let go of the frivolous because we choose the meaningful
7- stay present with our caree during those tough times
8- vent in ways that feel right for us
9- give back to other family caregivers
10- show up to work
11- sometimes just lay on the couch
12- prepare for a future without our carees
13- shed tears

The author gives the advice that if you see a tired, overweight, or stressed family caregiver, “avoid making the diagnosis that self-care is missing. What you see isn’t lack of self-care. It could be lack of help. It could be lack of understanding. It could be lack of support. It could be a lack of financial resources. It may be all of that and more. … You can minimize that stress by pitching in to help, by listening to him or her (and that’s it — just listen) and by thanking him or her.”

Here’s a link to the full blog post:

www.caregiving.com/2017/07/12-ways-we-care-for-ourselves-during-caregiving/

12* Ways We Care for Ourselves During Caregiving
Jul 21, 2017
by Denise

CareGiving.com

Robin

 

Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.

Robin

—————————–

www.apdaparkinson.org/community/northwest/about/newsletters/

Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.

WHAT IS APATHY?

Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)

WHAT TO LOOK FOR IF YOU ARE CONCERNED ABOUT APATHY

A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.

WHY IS IT NOT DEPRESSION?

In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.

TREATMENT

It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

“How to Improve Resilience in Midlife” (NYT)

Several years ago, we helped put on a caregiver conference where the keynote speaker talked about building resilience and coping skills in the face of parkinsonism and neurological decline. He said that resilience is both nature and nurture; there are definitely things we can actively do to build resilience. This article in yesterday’s New York Times is about that. Here’s one short quotation from the resilience expert interviewed for the article: “Live your life in a way that you get the skills that enable you to handle stress.”

The expert suggests this approach to improving resilience:

* Practice Optimism
* Rewrite Your Story
* Don’t Personalize It
* Remember Your Comebacks
* Support Others
* Take Stress Breaks
* Go Out of Your Comfort Zone

Here’s a link to the article:

Well|Mind
How to Improve Resilience in Midlife
By Tara Parker-Pope
New York Times
July 25, 2017

Robin

“Recording a Legacy: How to Create a Life Journal”

This is a recent blog post from Crossroads Hospice & Palliative Care (crossroadshospice.com).  The post describes their “Life Journal” program and encourages all families to consider creating such a journal.

In a separate blog post, Crossroads Hospice provides a list of questions to ask a loved one in order to create a journal or something similar:

www.crossroadshospice.com/family-caregivers-blog/2017/july/06/questions-to-ask-a-terminally-ill-loved-one/

Note that Crossroads Hospice operates in seven states.  One of those is NOT California!

Robin

——————–

www.crossroadshospice.com/family-caregivers-blog/2017/july/11/recording-a-legacy-how-to-create-a-life-journal/

Blog: Hospice Views
Recording a Legacy: How to Create a Life Journal
Posted on Tuesday July 11, 2017
Crossroads Hospice & Palliative Care

One of the most popular segments on NPR’s Morning Edition are recordings from StoryCorps (storycorps.org), a non-profit organization with the mission to collect, share, and preserve the stories of individuals from all walks of life.

StoryCorps typically has individuals interviewed by a friend or family member while a trained StoryCorps facilitator assists. After the interview, the individuals receive a CD of their conversation. With their permission, another copy is archived at the American Folklife Center at the Library of Congress.

Life Journals capture a legacy.

At Crossroads Hospice & Palliative Care, volunteers interview patients about their life story and gather the words and photos in a hardbound book called a Life Journal. The journals contain the history of the patient’s life, including their heritage, life experiences, treasured moments, and advice. The Life Journal is a lasting legacy to reinforce how important parts of the patient’s’ life has been to them and their family. It also provides the family with a book to cherish after their loved ones have passed.

You can create a similar book with your loved one’s stories, recipes, photos, artwork, or words of wisdom.

How to Create a Life Journal

Start by finding a good time to interview your loved one. Holidays may be convenient if you don’t often see them otherwise. However, holidays can also be chaotic. You may find it easier to schedule several days when you and your loved one will be able to give the project your undivided attention.

Interviewing for a Life Journal

For someone you are close to, you probably already know a lot of the big family stories. You can ask your loved one to retell these stories or fill in some additional details to get the conversation started. Then start to work through different areas of their lives – their family and heritage, school days, time in the military, courtship of a spouse, and raising a family are all good starting points. Use our list of questions to ask an older relative to get ideas on what to ask.

Once you have the basics covered, schedule a follow-up visit to fill in details. At this second visit, you should have a good idea of what the outline of your loved one’s Life Journal is going to look like. This is a good time to confirm details and look through old photos together to go along with the stories you are including in the book.

Compiling the Life Journal

Having gathered all your notes and photos together, you have a few different options for how you would like to present them.

For those comfortable with a computer, the easiest way to create a Life Journal is to use an online service like Shutterfly to combine the stories and photos together. The user-friendly application will walk you through choosing a design and color scheme that best fits your loved one’s style and interests.

For those less technologically inclined, a scrapbook is a wonderful alternative. Craft stores have many options for books and added embellishments like stickers and decorations. You or a friend or family member can print out the stories you wish to include or can write them out by hand.

Layout each page of your scrapbook on blank pieces of paper before you begin affixing anything in the final book. This will give you the opportunity to make adjustments to the layout and the order of pages. Once you are sure you know how you want the book to be laid out, begin gluing down the key elements like stories and photos, then add things like quotes and stickers.

Presenting the Life Journal

Once your project is complete, share it with your loved one. They will enjoy reading the stories as much as you do. If your loved one is willing, you can also schedule a family book release where the family can come together to enjoy the book and share additional stories. If you do a book release party, consider recording some of the new stories you hear for posterity. You never know where these stories will lead you.

Copyright © 2017 Crossroads Hospice & Palliative Care. All rights reserved.

Save the Date! Saturday, October 28, PSP/CBD Research Update and Family Conference

Save the date!

Brain Support Network will host the:

PSP/CBD Research Update and Family Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)

This conference is for families coping with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).   Professionals and anyone in the community are also welcome to attend.

BSN’s planning partner is Dr. Adam Boxer and the team at the UCSF Memory & Aging Center. UCSF is the lead institution for PSP and CBD clinical trials. We are lucky to have them in our backyard!

The conference will be run from 9am to 5pm. The morning will feature international researchers in town for a major conference on PSP, CBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and families.

We anticipate registration will open in early September. Join our PSP or CBD email lists and we’ll send you an update when registration opens. Alternatively, check back at our website in September to register. Our meeting facilities are planned to accommodate 150 participants.

Stay tuned for more details!

Robin

 

Eight medical alert systems worthy of consideration (Reviews.com, February 2017)

This blog post summarizes the evaluation done by Reviews.com of 69 medical alert systems in early 2017. There were several winners:

Best customer service – Bay Alarm Medical
Best response time – Medical Guardian
Best mobile technology – MobileHelp

Five other systems to consider were:

Acadian On Call
Philips Lifeline
GreatCall Lively
Walgreens ReadyResponse
ResponseLINK

(Note that Philips Lifeline is available at a reduced rate from many hospitals in the San Francisco Bay Area.)

Reviews.com encourages consumers to “take action”:
* don’t dance around the subject with an elder
* evaluate the most appropriate system for your situation
* check your mobile coverage

In its evaluation, Reviews.com considered these factors:
* nationwide coverage
* whether the device required a full home security system
* excellent purchasing process
* breadth of equipment
* easy to get started and easy to stop the service

Here’s a link to the Reviews.com article:

www.reviews.com/medical-alert-systems/

Best Medical Alert Systems
Updated: February 20, 2017
Reviews.com

Robin