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

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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

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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