September 2018
Prepared for
Erin Long, MSW
Administration on Aging
Administration for Community Living
330 C Street, SW #1131A
Washington, DC 20201
Prepared by
Stephanie Hughes, MPP
Katharine Gordon, MSW
Donna Walberg, MBA
Michael Lepore, PhD
Edith G. Walsh, PhD
Elizabeth Gould, MSW
Molly Knowles, MPP
RTI International
701 13th Street, NW, Suite 750
Washington, DC 20005
Contract # HHSP2332009565IWC
Administration for Community Living
U.S. Department of Health and Human Services
Section Page
The authors gratefully acknowledge the following subject
matter experts who agreed to be interviewed for this guide:
• Nona
Best, North Carolina Center for Missing Persons, North Carolina Department of
Public Safety
• Jill
Cigliana, Memory Care Home Solutions
• Jeff
Dostalek, Fitch-Rona EMS
• Jessica
Empeno, Alzheimer’s San Diego
• Emily
Farah Miller, Farah Miller Consulting, LLC
• Michael
Knobbe, San Diego County Sheriff’s Department
• Mark
Odom, Alzheimer’s Orange County
• Michael
Proffitt, San Diego County Sheriff’s Department
• Ronda
Randazzo, Alzheimer’s Association, Massachusetts/New Hampshire Chapter
• Sharee
Rines, State of Georgia, Adult Protective Services
• Molly
Schroeder, Wisconsin Alzheimer’s Institute
• Shaun
St. Germain, Maine EMS
• Heather
Strickland, Georgia Bureau of Investigation
The authors also thank Michelle Myers, Loraine Monroe, and
Danielle Hennis for editorial and graphic assistance; Mark Howell for help with
the literature search; Rebekah MacKinnon for her help in coordinating
interviews and taking notes; and Erin Long of the Administration for Community
Living for reviewing the content. This toolkit was produced under contract by
RTI International through Contract HHSP2332009565IWC, Task Order HHSP23337038T
with the Administration for Community Living/U.S. Department of Health and
Human Services.
This guide is the work of the authors and does not
necessarily express the opinions of the Administration on Aging/Administration
for Community Living or the U.S. Department of Health and Human Services.
Overview
The purpose of this guide is to help community organizations collaborate
with first responders to better serve people living with dementia as part of a
broader community system of care and support. The guide
covers:
•
a brief background on the types of situations in
which first responders are most likely to encounter people living with
dementia;
•
common approaches to partnership between
community organizations and first responders;
•
challenges that community organizations and
first responders may experience;
• strategies
for community organizations to work successfully with first responders;
• state
and federal policies and funding related to first responders and dementia;
• available
resources, including training materials, sample policies, tip sheets, and
assessment protocols; and
• project
methodology.
Although the guide was developed for community organizations
conducting outreach to first responders, it has information first responders may
also find valuable. The information summarizes current research, reports and
resources, and guidance provided through interviews with experts. Three
programs are described in detail as case studies.
This guide and many of the programs and initiatives described
were developed with funding from United States Department of Health and Human
Services Administration for Community Living/Administration on Aging (ACL/AoA).
The guide is one of many resources available at the National Alzheimer’s and
Dementia Resource Center website at https://nadrc.acl.gov.
Introduction
Nearly 6 million people in the United States are living with
dementia. The majority remain in the community, and as their cognitive
functioning gradually declines, they need help staying safe (Alzheimer’s
Association, 2018a). Behavioral symptoms such as memory loss, confusion,
aggression, and agitation are common, and many people living with dementia also
experience other chronic medical conditions such as diabetes, hypertension, and
congestive heart failure (Alzheimer’s Association, 2018a; Bunn et al., 2014).
These behavioral and medical issues often bring people into contact with first
responders—the law enforcement officers, firefighters, and emergency medical
services (EMS) personnel who are charged with keeping citizens and communities
safe. Examples of common scenarios are the following:
• People
living with dementia might walk out of a store with items they forgot to pay
for and face charges of shoplifting.
• They
may become lost or get into an accident while driving.
• They
may fall and need EMS.
• They
may call 911 thinking a misplaced item has been stolen.
• They
may become victims of financial abuse by paid caregivers or even family members
who take advantage of their diminished cognitive capacity.
First responders increasingly recognize the need for dementia training.
They are often uneducated about the signs of possible dementia and may not know
how best to respond to incidents involving dementia. In one study, police
officers with greater dementia knowledge were better able to recognize
behaviors as potentially dementia-related, but researchers also found that
additional skills training may be necessary for officers to become truly
competent in managing these situations (Sun et al., 2017). EMS providers also typically
do not receive dementia training or screen for possible cognitive impairment,
even though people living with dementia are significantly more likely than
those without dementia to visit the emergency department (ED) or be
hospitalized (Feng et al., 2014; Shah et al., 2011).
Community organizations with dementia expertise play an important
role in bridging the knowledge gap for first responders. These service
organizations include a range of providers such as Alzheimer’s organizations, Area
Agencies on Aging (AAAs), social service agencies, offices on aging, and senior
services agencies. Other providers such as health care systems or residential
facilities may also work with first responders on this topic. In this guide,
the term community organization
refers to all these provider types.
Contact between a community organization and a first responder
agency is sometimes limited to a training presentation, but there is potential
for the relationship to build over time. A champion within a police department
or EMS agency can help make the case for greater time and focus on dementia and
may also be willing to serve on an advisory committee or task force. First
responders also value community organizations more as they see that the
information and services they provide save their agencies time and help them do
their jobs more effectively. Eventually, the relationship may entail close
coordination of services, with the potential to avoid duplicated effort and to
better meet the complex social, psychological, medical, and financial needs of people
living with dementia (Payne, 2013).
Common Situations Involving People Living with Dementia and
First Responders
First responders may encounter people living with dementia and
their families in a wide variety of circumstances. This section covers some of
the most common situations. Although evidence on effective approaches is mostly
anecdotal, we have included recommended practices based on the literature and
practitioner interviews where available. More information about specific
interventions, training programs, and ways community organizations and first
responders can collaborate to address dementia is presented in the section on Ways for Community Organizations and First Responders
to Work Together.
Wandering
|
The IACP policy recommends treating missing
persons with dementia as an emergency, providing persons found with
appropriate support, and promoting awareness that older adults who appear
confused or disoriented may have wandered and not yet been reported lost.
|
The International Association of Chiefs of Police (IACP) National
Law Enforcement Policy Center has developed a model policy for
law enforcement on how to respond to missing persons events involving people
living with dementia.
• An
estimated 6 in 10 people living with dementia will wander (Alzheimer’s
Association, n.d., 2).
• Most
people who wander on foot remain within a 10-mile radius of home.
• On
average, law enforcement agencies spend 9 hours locating a wandering person, costing
$1,500 per hour of investigation (Yang & Kels, 2017).
Wandering can be related to behavioral symptoms such as
restlessness or agitation or a response to uncomfortable stimulation, or it can
be triggered by an association such as car keys hanging by the door. People
living with dementia may become disoriented and lost even in their own
neighborhoods, and when they do, they typically behave differently from other
people who are lost: they do not take a coherent path, they may try to hide,
and they may not respond when called.
They are often unaware of the dangers surrounding them and are at
risk of fatal exposure to weather, injurious falls, traffic accidents, and
drowning (Petonito et al., 2013). The risk of injury and death increases with
each hour that passes; therefore, efficient and appropriate search processes
are critically important (IACP, n.d.).
A coordinated interagency law enforcement response and
comprehensive training for law enforcement personnel improve the likelihood of
locating the person quickly. Voluntary registry systems and electronic tracking
also facilitate search efforts (see the section Preventing
and Managing Wandering Incidents).
Traffic Stops
|
The University of California-San Diego School of
Medicine and Calit2’s Training, Research and Education for Driving Safety
(TREDS) program has developed a Driver Orientation Screen for Cognitive Impairment
(DOSCI)
 , a brief driving assessment questionnaire for
law enforcement and video trainings on how to use that assessment.
The IACP’s Identifying and Helping a Driver with
Alzheimer’s Disease
helps law enforcement officers assess and
communicate with drivers who may have dementia. |
People living with dementia are at greater risk of an accident
while driving than those without dementia. Impairment may present as:
• driving
erratically or failing to obey street signs, traffic lights, or speed limits;
• appearing
confused or intoxicated; or
• leaving
the scene of an accident unaware of injuries or property damage.
Law enforcement often encounters individuals with dementia who
are driving erratically and are lost but have not yet been reported missing.
The ability of law enforcement to recognize the signs and symptoms of dementia
in these situations is critical for the health and safety of the person and
others on the road.
Experts agree that if there has been a driving violation, the
driver should be cited instead of issued a warning to create a paper trail for
caregivers, medical practitioners, and licensing agencies. This may make it
easier for family members or authorities to encourage or require the person to
stop driving.
Elder Abuse/(Self)Neglect, Exploitation, and Domestic Violence
•
Estimated rates of self-neglect among people
living with dementia range from 14% to 19% (Dong, Chen, & Simon, 2014).
•
Having dementia appears to put people at higher
risk for multiple forms of abuse by caregivers (Payne, 2013).
•
Emergency responders are often the first ones to
identify abuse (Payne, 2013).
Abuse can take many forms, including physical injury; verbal
abuse or threats; failure to provide a safe environment, proper medical care,
or food; physical restraints; financial fraud or theft; sexual abuse; or
self-neglect (Alzheimer’s Association, n.d., 1).
Financial exploitation occurs when a person misuses or takes the
assets of a vulnerable adult for his or her own personal benefit (National
Adult Protective Services Association, n.d.). Financial exploitation is
becoming rampant according to law enforcement agencies. Bankers, doctors, and
other mandated reporters often report these incidents to law enforcement or
APS. The cases pose tremendous costs to both victims and law enforcement. One
elder abuse unit within a law enforcement agency estimated that each case of
financial abuse takes 1-2 weeks of staff time to investigate.
Domestic violence may be an existing problem before a dementia
diagnosis, or it may occur because of caregiver frustration, behavioral
symptoms of aggression or agitation in the person living with dementia, or a
combination of both. Although law enforcement is responsible for making sure
that all parties are safe from violence, it is also crucial for officers to
recognize when dementia may be involved so that inappropriate arrests can be avoided,
referrals made to APS and, in some cases, transfer made to an ED for evaluation.
In many jurisdictions, there are laws requiring mandatory arrest in cases of
domestic violence, which can complicate this process.
Law enforcement also receives calls about unlicensed care homes,
which are facilities that claim to be legitimate care homes but are not
licensed by the state (Greene et al., 2015; Lepore et al., 2018). In some
cases, the operators of unlicensed care homes recruit victims, including people
living with dementia, from institutional care settings, such as hospitals. In
turn, these homes have been found to lock their victims in unsafe conditions
(e.g., in unventilated basements, sheds, or attics with limited access to basic
needs, such as food, water, and toilet) and to strip them of resources with
financial value, including government social welfare payments, food stamps, and
medications which can be sold on the black market (Greene et al., 2015; Lepore
et al., 2018). Hospital staff can play a role by confirming that personal care
homes are licensed before discharging people to them. In Georgia, an app has
been developed in partnership with the Department of Community Health to list
licensed personal care homes in the state, which can be used by first
responders and the public to verify care home licensure.
|
“…Sometimes
when a person with Alzheimer’s has lost or misplaced an item, he or she may
call 911 to report a theft. In many cases, reports of a bure intruder turn out
to be an otherwise familiar family member or even a spouse whom the person
with dementia has forgotten”
—
(Alzheimer’s Association, 2006, p. 3).
|
Collaboration across multiple state and community organizations—such
as APS, Sheriff’s departments, police departments, state bureaus of
investigation, social service, and Alzheimer’s organizations—is critical for
addressing issues of elder abuse/(self)neglect, and domestic violence involving
people living with dementia. These are people with complex care needs that
cannot be addressed by one agency. Having a common language, and understanding
of each organization’s role and capabilities, can support these partnerships
and help prioritize training needs. Cross-agency partnerships are strongly supported
by having champions within upper management at each collaborating agency.
Although training first responders about how to work with people living with
dementia requires a commitment of resources, experience indicates that it can save
tremendous time and money spent on subsequent cases.
Behaviors of People Living with Dementia
That Lead to Involvement of Law Enforcement
People living with dementia are at risk of being charged as
criminals for actions that stem from their diminishing cognitive capacity. For
example:
• Memory
loss may cause the person to forget to pay for an item in a store.
• Loss
of executive function may lead to socially inappropriate behavior such as
indecent exposure.
• Behavioral
symptoms such as aggression can result in acts of domestic violence.
These incidents are challenging for law enforcement because the
person may not realize that they are acting inappropriately and usually has no
intent to commit a crime. Training officers for these types of incidents is
critical for avoiding inappropriate responses that can cause further harm to
the individuals involved.
As mentioned above, in cases of domestic violence it is important
for officers to be able to ensure the immediate safety of those involved while
avoiding inappropriate arrests. System-level responses are emerging, such as
specially trained teams of law enforcement and APS that respond to urgent
situations involving people living with dementia. Through this sort of
crisis-based program, officers can contact an APS worker or another dementia
specialist directly, 24 hours per day. This type of rapid response helps
address urgent needs of the person or caregiver and helps law enforcement
resolve a case more quickly by bringing in supportive services.
Medical Calls to 911
|
“Many people have it
[dementia] and nobody is being detected. This is likely a huge reason for
[hospital] readmissions. [People living with dementia] can’t manage their
conditions.”
—Jill
Cigliana, Memory Care Home Solutions
|
• People
who are transported by ambulance to a hospital ED are more likely to have
dementia than those who arrive via other means (Buswell et al., 2016; Shah et
al., 2011).
• People
with dementia frequently do not report a dementia diagnosis or medications to
EMS providers (Shah et al., 2011).
Implementing dementia-specific training for EMS staff may
increase the accuracy of the patient health history reported to ED staff and
improve the likelihood of appropriate treatment for people living with
dementia. EMS providers who know about cognitive impairment can better gauge
the accuracy of patient-reported health status and health history and the
patient’s understanding of medical instructions if the patient refuses care.
Additionally, pre-hospital identification of cognitive impairment by EMS can
provide vital information to the larger health care team that may affect hospital
admission decisions (Shah et al., 2011). Registry information (see the section
on Voluntary Registries) or medical information
posted in the home can supplement information provided by the individual or
family.
Ways
for Community Organizations and First Responders to Work Together
First responders and community organizations work together in
various ways to enhance the safety of people living with dementia, their
families, and the community. Community organizations knowledgeable about
dementia can educate first responders to respond effectively to common
situations. First responders may develop or tailor services to serve people
living with dementia, for instance, through registries or alert systems for
wandering, or community paramedicine for people in need of regular health
monitoring. They may also seek to identify people at risk, such as those living
alone with dementia, and to put in place a network of monitoring and support
services.
Providing Dementia Training to Law Enforcement, EMS and Firefighters
|
“Understanding the facts
of [dementia] does not necessarily transfer to communication
skills…additional training…may be needed to make police officers capable of
approaching, engaging and helping [people living with dementia]”
|
The need to provide dementia training for all types of first responders
has become urgent as the population with dementia is expected to increase by
51% by 2050 and will have increasing contact with law enforcement, EMS, and
firefighters (Hebert et al., 2013). Few first responders know how to recognize
and interact with people living with dementia, often compounding already traumatic
events. Community organizations can offer dementia training to help first
responders find people who wander, reduce inappropriate arrests, promote proper
management of domestic situations, and increase connections to community
resources with the goal of stemming future emergency situations.
Many resources are available for
training first responders on dementia:
• The
International Association of Chiefs of Police has two training
webinars on dementia for law enforcement.
• The
National Council of Certified Dementia Practitioners offers a 6-hour, in-person training
for a fee.
Examples of dementia training programs
include the following:
In
Massachusetts, Silver Alert legislation was passed that included mandated
dementia training for law enforcement and first responders. (Silver Alert is a
system of emergency communications used to help locate missing older adults
with cognitive impairment.) The Alzheimer’s Association worked with the
Massachusetts police training committee to identify training needs and create a
standard training curriculum.
Using a
train-the-trainer model, the Alzheimer’s Association provided a half-day
training to approximately 90 certified police instructors who then delivered
the 4-hour training to their departments over the course of a year. The
Association also trained more than 250 police chiefs at their annual conference
and provided ongoing coaching and resources to the police instructors and
departments, funded by the Association’s operating budget. The training was
delivered to existing officers statewide and was integrated into classroom
training for new cadets.
The 4-hour
training program is delivered in 10 modules including Silver Alert, Alzheimer’s
disease and related dementias as they present in the field, communication
challenges and behaviors, driving and traffic stops, wandering and search response,
abuse and neglect, firearms and disaster response, and community resources
available to law enforcement and to individuals.
Through grant
funding from the Tufts Health Foundation, an additional 3-hour training was
developed for firefighters and EMS, including modules on response to urgent
scenarios, pain, emergency shelter, and reporting abuse. Massachusetts Office
of Emergency Medical Services approved 3 continuing education credits for all
levels of EMS personnel completing the training, which has led to high demand
from Massachusetts firefighters and EMS personnel and other first responder
training conferences. Curriculum has also been developed and provided for
Search and Rescue personnel statewide.
As part of an
ACL-funded grant, the Wisconsin Alzheimer’s Institute (WAI) at the University
of Wisconsin–Madison, in partnership with the Alzheimer’s Association and the
University of Wisconsin Department of Family and Community Medicine, is providing
training to local paramedic service providers in south-central Wisconsin. The
paramedic service is tasked with delivering friendly home visits to people
living alone with dementia.
Community
paramedicine is a relatively new approach to improving health care for people
who overuse emergency services, and most programs do not focus on people living
with dementia, particularly those living alone. This new project is one of a
very few that are beginning to explore this avenue of dementia service
delivery. Unlike many community paramedicine programs that provide basic
medical care as part of home visits, this project is using non-medical,
friendly visits to connect people with other services and resources (See
Section Community
Paramedicine for more
information about community paramedicine.)
The initial
in-person training lasted 3 hours and covered the basics of dementia. A second,
6-hour in-person training is focused on motivational interviewing skills and
techniques aimed at encouraging clients to accept case manager support and
other services in the home. Two paramedics also attended a separate 1-day “best
practices in dementia care” seminar by a national dementia care trainer. WAI
has also developed and delivered a 2-hour training for the paramedics, which
includes information on program implementation and data collection. Local
senior center case managers have participated in this training to learn more
about the program and how to coordinate services with the paramedics, including
referral processes between the agencies and service flow from initiation to
discharge.
Tips for training first
responders:
• Understand
that the cultures of first responder agencies, especially law enforcement, can
be different from other community groups and different from each other. Ask
what situations are causing challenges or questions and tailor training
accordingly.
• Keep
training short and simple. As one expert suggested, tell them “what to do,” and
“what to say.”
• When
possible, invite champions within the first responder agency to deliver or help
deliver the training. Peer-to-peer presentation can lend great credibility.
• Once
you build a relationship with a first responder agency, leverage this
connection to establish contacts with other agencies.
First responder training content should include the key signs of
dementia and simple tools for assessing cognition that can be used in an
emergency. Training can also address special situations that first responders
typically encounter. For instance, law enforcement training should include optimal
strategies for wandering prevention, the nature of wandering incidents, and
best practices in search and rescue for people living with dementia. The Resources section of this guide contains multiple links
to quality training resources, including videos, webinars, and in-person training
options.
|
Case Study #1—Law Enforcement Training
|
|
Alzheimer’s
San Diego, Alzheimer’s Orange County, San Diego County Sheriff’s Department, Adult
Protective Services, Psychiatric Emergency Response Team, other law
enforcement agencies
Alzheimer’s San Diego and
Alzheimer’s Orange County are dementia service organizations providing
education, support and respite. Each had some experience training law
enforcement officers on dementia basics, but an ACL grant awarded in 2015
enabled them to expand their work with first responders.
Their initial goal was to
convene safety task groups in each county, update and expand training,
develop brief training videos, distribute resource cards on wandering, and
help develop an app that would enable first responders to better recognize
signs of dementia. Alzheimer’s San Diego and Alzheimer’s Orange County each
convened a safety task group, including representatives from APS, local AAAs,
sheriff’s departments, and police departments to inform planning and development
of trainings and materials.
Both Alzheimer’s San Diego
and Alzheimer’s Orange County have provided extensive training to law
enforcement officers, firefighters, and EMS. Alzheimer’s San Diego has
offered most trainings in person using its own standard content customized to
the needs of the agency. More than 1,400 people have been trained. Training
has been integrated into the required training for all Psychiatric Emergency
Response Team members—specially trained law enforcement officers who are paired
with mental health professionals to respond to crisis situations. Alzheimer’s
San Diego has also provided training to members of the Retired Senior
Volunteer Patrol, a volunteer program of the San Diego Police Department that
provides safety checks for elderly residents who live alone.
In addition
to in-person trainings for local law enforcement, Alzheimer’s Orange County
has developed a series
of four brief training videos with a total running time of 15 minutes that cover common
scenarios: a traffic stop, a wandering event, a 911 call from a distressed
caregiver, and a distressed person living with dementia who thinks she has
been robbed.
Opportunities to partner
with first responders continue to expand. For example, Alzheimer’s Orange
County is now partnering with an occupational therapist who can advise law
enforcement on driving assessments for people with cognitive impairment.
Alzheimer’s San Diego, in collaboration with the local criminal justice system,
is exploring the use of gun violence restraining orders to ensure the safety
of people living with dementia and their families when firearms are in the
home. The San Diego District Attorney launched an elder abuse initiative that
has led to case coordination between APS, the Sheriff Department’s Elder
Abuse unit, and Alzheimer’s San Diego for people in crisis or high-risk
situations.
|
(continued)
|
Case
Study #1—Law Enforcement
Training (continued)
|
|
Alzheimer’s San Diego is
also developing a phone app for first responders in collaboration with the
San Diego State University Geriatric Workforce Enhancement Program. The app
will give officers and deputies quick access to helpful information when
responding to a call involving a person with dementia, including signs and
symptoms, common behaviors, communication strategies, home safety tips, and
an overview of wandering behavior. Through the app, officers will also be
able to make direct referrals to APS, enroll individuals in the Take Me Home
program (a local registry for adults with special needs, accessible only by
law enforcement), and make a direct referral to Alzheimer’s San Diego for
additional support and assistance. The free app will be available on iPhone
and Android devices.
Developing relationships
with and programs for first responders has involved challenges. One of the
biggest difficulties has been adapting to the specific needs of different
first responder agencies. Agencies have different processes for arranging
training, and informational needs, amount of time allotted, and the physical
space also vary. Trainers do not always receive information in advance that
enables them to tailor their presentations, so they need to be experienced
enough to be able to rapidly adjust to circumstances and needs.
Even with grant funding,
comprehensive outreach to all local law enforcement is not possible. Both San
Diego and Orange counties are large and contain multiple law enforcement
agencies and jurisdictions. Turnover within law enforcement often requires new
relationships to be established. The organizations’ growing reputations as
effective trainers have facilitated connections with new agencies, while
follow-up contact with these agencies has helped build sustainable
relationships.
|
Preventing
and Managing Wandering Incidents
|
“[The] most important
thing is to be educated, trained and prepared. When [a person wanders] you
have to move fast because the first few hours are the most critical for
people with dementia.”
|
First responders and community organizations use several
approaches to prevent and manage wandering incidents. Having protocols and
technology in place can improve the likelihood of locating the person living
with dementia more quickly and safely and can save law enforcement time and
resources (Bureau of Justice Assistance, 2014; IACP, n.d.).
Alert systems
Mass communication systems such as mobile phones, digital road
signs, or social media can be used to alert law enforcement officers and the
public that a person with dementia or other vulnerable adult is missing (Bureau
of Justice Assistance, 2014). Silver Alert is the most well-known alert system.
Each state has different policies, but it is common practice for
alert systems to require that people reported missing be at least 60 years old
and have Alzheimer’s disease or some other cognitive impairment. Generally, a
missing person report must be filed with law enforcement, and law enforcement determines
if requirements have been met to issue an alert. In addition to age and
impairment of a missing person, alert programs may have other eligibility
criteria, such as determination of a serious risk to the health and safety of
the individual. Guidelines in each state determine how broadly the alert is disseminated.
States generally absorb program costs within existing agency budgets.
Voluntary
registries
Registries give people living with dementia and their families
the opportunity to provide law enforcement with information that can help
locate the person, prior to a possible wandering event. In addition to people
living with dementia, some registries include people with autism spectrum
disorders, mental illness, developmental disabilities, or other conditions that
might increase the likelihood of becoming lost.
Voluntary registry systems house a variety of data such as recent
photographs, locations that hold special interest to the person with dementia
like a past home, and information about their impairment. This information can
help focus efforts in the first few crucial hours of the search.
Procedures for collecting and accessing registry information
vary. Families may fill out a paper form, sign up online, or be interviewed by
law enforcement. Law enforcement agencies also vary in the degree of technological
sophistication they can employ in accessing this information during a search
and rescue call, but even simple applications can provide critical information
that saves time in the search process.
The primary challenges to establishing registries include
marketing and outreach to elicit participation and maintaining data to ensure
that information remains current and useful (IACP, n.d.).
The IACP strongly encourages states and communities to implement
voluntary registry systems and connect to national registry systems. The
Alzheimer’s Association’s MedicAlert
+ Safe Return program, the Irvine, California “Return
Home Registry,” and Polk County, Florida’s “Project
Safe & Sound” are examples.
Electronic tracking
A growing number of products are available to help locate someone
during a wandering event. Many of these are technologies marketed to family
members to be able to track or find their loved ones more easily, but one
system, Project Lifesaver International, involves law enforcement agencies as
well.
Project Lifesaver uses a wristband that looks like an ordinary
watch that cannot be removed by the individual. A law enforcement officer meets
with the person and their caregiver monthly to replace the batteries and
conduct a routine check-in. If the person wanders they can generally be found
within minutes.
Education and prevention
Wandering can sometimes be avoided with basic education and preventive
steps by people living with dementia, their families, and first responders. For
instance, keeping car keys and purses out of sight and away from the door,
installing an alarm on the door, and keeping the person occupied with engaging
activities can reduce the likelihood of wandering (Alzheimer’s Association,
2018a).
The Resources section of this
guide includes several training programs and tip sheets focused on preventing
and handling wandering incidents.
Ensuring the Health and Safety of People Living Alone with
Dementia
|
The National Alzheimer’s and Dementia Resource
Center’s Providing Services to Individuals with Dementia
Who Live Alone offers
practical strategies to service professionals working with this group.
|
Recent data from the National Health and Aging Trends Study
indicate that more than 30% of people with dementia live alone (Amjad et al.,
2016). Their level of cognitive impairment varies, and some do have support
from nearby friends or relatives. However, the potential for injury or
self-neglect is real and has led to the development of programs that identify
and support these individuals, often through coordination between first
responders and community organizations.
Identifying people at risk
|
The International Association of Chiefs of
Police’s Identifying and Evaluating the At-risk Older Adult is a helpful tool for law enforcement to assess
drivers or other older adults for possible dementia.
|
Dementia services organizations have recently increased their
efforts to identify people living alone with dementia, particularly those
without a caregiver regularly checking on them. ACL has identified this as an
important service gap and has funded grants to help community organizations
address the needs of people living alone. First responders can play a key role
in this work.
Safety checks
Home visitor programs and phone check-ins also show promise for
supporting the safety of people living alone with dementia. For example, in
Lake County, Florida, the Senior Watch program provides daily check-ins for
at-risk older adults. Each day, the enrolled person calls to check in with the
Senior Watch operator. If Senior Watch does not hear from a participant, a
phone call is made to a neighbor or relative, and if contact is not confirmed,
someone from the Sheriff’s department will come to the home for a welfare check
(Lake County Sheriff’s Office, n.d.).
In San Diego, the You Are Not Alone (YANA) program operated by
the San Diego County Sheriff’s Department provides daily telephone checks for
enrolled seniors who live alone. Program participants also benefit from one
personal visit each week from a Sheriff’s department volunteer. If an enrollee
cannot be reached during a scheduled check-in, a volunteer patrol member will
go to the person’s home to check on them (San Diego County Sheriff’s
Department, n.d.). Through an ACL grant, Alzheimer’s San Diego has provided
dementia training to YANA volunteers to help them better recognize people with
possible dementia who may be able to benefit from additional support services
in the community.
|
Case Study #2—App for Law Enforcement
|
|
Law enforcement and APS staff
frequently encounter situations where someone appears to have been abused,
neglected, or exploited. Unlike Child Protective Services, APS is not
available 24 hours a day, 7 days per week, and often, late night calls are
made to law enforcement when APS is not available for a consultation.
Previously, the lack of immediate
access to emergency services through APS in Georgia was leading law
enforcement to take people with dementia to hospitals with a “social
admission”—a hospital admission for which no acute medical issues are felt to
be contributing. Law enforcement personnel were also more frequently
encountering situations where people with diminished cognitive capacity
appeared to be wandering or lost. Law enforcement and health care
professionals needed quick access to information, screening, and services for
these and other urgent situations.
|
(continued)
|
Case
Study #2—App for Law
Enforcement (continued)
|
|
The
Georgia Department of Human Services, Division of Aging Services (DAS)
determined that an app could prove useful for law enforcement, APS, other
health care professionals, and the public and commissioned the development of
the Georgia Abuse, Neglect and Exploitation (GANE) app. The GANE app
specifically provides access (via smart phones and tablets) to resources for
law enforcement and other professionals that respond to abuse, neglect, or
exploitation. DAS led the app development in collaboration with the Georgia
Chapter of the Alzheimer’s Association and the Georgia Bureau of
Investigation. The core development team included the former state director
of aging, a former investigator for the DA’s office, a former police
detective, and a developer with experience creating an app for vulnerable
adults living alone. Other contacts in law enforcement served as an informal
focus group to identify additional resources to build into the app.
The finished product includes
functionality available to the public, health care professionals, law
enforcement, and other professionals. Features for the public and health
professionals include contact information for various agencies and
information on laws related to abuse, neglect, and exploitation. Although
originally designed for Georgia, the app can be customized to any state or
locale by contacting the app developer, David Cardell from EyeOn App, LLC.
Law enforcement and other elder abuse
professionals can obtain an activation code that provides access to:
•
screening
questions and algorithm for cognitive functioning;
•
screening questions and algorithm for
determining abuse, neglect, and exploitation;
•
screening questions and algorithm for
determining financial capacity;
•
emergency placement options by zip code
and nearest to your location;
•
Mattie’s Call (receive and send missing
persons alerts; this is Georgia’s version of Silver Alert);
•
push notifications of the latest scams.
|
|
Training on use of the app for law
enforcement was first provided as part of the state’s two-day At-Risk Adult
Crime Tactics Specialist Certification course, which is open to first
responders including law enforcement and EMS. This training is offered in
approximately 20 of the 159 counties in Georgia each year. The IACP
Alzheimer’s Initiatives training program conducted in Georgia also
incorporates information about the GANE app. The Georgia Bureau of
Investigation provides this training in multiple counties each year. The team
that developed the app also presents and trains on the app in several Georgia
counties each year. Resource constraints within partner agencies have limited
dissemination.
The app development and implementation
were originally funded through a federal grant from ACL and asset funds
acquired through criminal cases. The funds to maintain the tool come from
APS’s budget, which is part of the general state funds. It costs $8,000
annually to host and maintain the app.
|
(continued)
|
Case
Study #2—App for Law
Enforcement (continued)
|
|
To date, the app has been downloaded by
more than 2,000 unique users. App uptake has faced challenges because some
law enforcement officers use BlackBerries and there are no plans to develop
an app for that platform. Some local police departments and other providers
have been blocked from downloading the app because of firewalls/security
concerns. The continued promotion of the app has declined because of staff
turnover at the Georgia Alzheimer’s Association and the Georgia Division of
Aging Services. The development team must establish relationships with their replacements
to keep a positive focus on maintaining and improving the app.
|
Community
Paramedicine
|
CP programs for people living with dementia may
include a variety of services:
• cognitive
screening and diagnostic referral;
• falls
prevention and education;
• home
safety assessment;
• medication
reconciliation;
• administration
of medication (e.g., IV line);
• general
physical exam;
• assessment
of activities of daily living;
• review
of advanced care planning; and
• referral
to primary care, APS, social services, or other dementia-specific services
such as respite.
|
Traditionally, EMS has limited its scope of practice to
responding to 911 calls and transporting patients to an acute care hospital ED
or transferring patients between hospitals or other care settings.
Community
paramedicine (CP) is a relatively new model that uses EMS providers to deliver health
care in coordination with other medical providers (Abrashkin et al., 2016). CP
care is delivered in a patient’s home and typically targets frequent EMS users, people recently discharged from
a hospital because of a serious health condition, and homebound
individuals with multiple chronic illnesses. CP programs now exist in most states, although few focus
exclusively on people living with dementia (Goodwin et al., 2015; National
Association of State EMS Officials, 2018).
Patients are generally referred to CP programs through EMS
records of 911 calls, primary care providers, hospital discharge planners,
senior centers, and other community service providers. Training for CP
providers should include communication strategies and tips on building a
relationship. Many older adults are hesitant to accept help because they fear
they will be removed from their homes if it is determined that they are unsafe.
EMS staff report that with proper training, staff can approach these situations
in a way that engenders trust.
Staffing models for CP programs vary. Programs with full-time CP staff
can schedule appointments with patients. Other programs use existing EMS staff
to conduct CP visits on their “off” time, and emergency calls may interrupt a
visit. For people with cognitive impairment, it is preferable for services to
be routine and uninterrupted, using dedicated staff. However, this model is the
exception and not the rule because of resource constraints.
Funding for launching and sustaining CP programs is a major
challenge. A lack of public and private insurance reimbursement for
nontransported paramedic services is one obstacle to growth of these programs (Abrashkin et al., 2016).
Typically, programs receive funding from public and private grant sources, private
donations, and per member per month fees. Minnesota allows for reimbursement
for some community paramedicine services through its state Medicaid program.
Commercial health insurance providers, including Anthem Blue Cross and Blue
Shield, have also begun to reimburse for some community paramedicine
activities. ACL grants have provided funding to launch a few emerging CP programs
to serve people living with dementia.
|
The U.K.’s Dementia
Partnerships has developed a basic resource manual for EMS staff to
understand dementia communication strategies and other topics related to
emergency care for people living with dementia: Dementia Learning Resource for Ambulance Staff.
|
|
Case
Study #3—Community
Paramedicine and Dementia Services
|
|
Health
care professionals’ limited dementia knowledge is often cited as a
significant hurdle to improved outcomes for people with the condition. This
was the situation facing the Community Health Access Program (CHAP) of
Christian Hospital in St. Louis County, Missouri, when they launched a CP
program to fill health care gaps and reduce unnecessary 911 calls, ED visits,
and hospital readmissions.
|
(continued)
|
Case
Study #3—Community
Paramedicine and Dementia Services (continued)
|
|
The CHAP program, which employs
advanced practice paramedics to identify frequent “over-users” of EMS, found
that the highest users were older adults. Often these patients’ challenges
were related to undiagnosed cognitive impairment, which hampers the ability
to self-manage health situations such as complex hospital discharge
instructions. To better serve these patients, CHAP needed to improve its own
staff’s dementia knowledge.
The Express Scripts Foundation stepped
in with $175,000 to fund a pilot project partnering CHAP with Memory Care
Home Solutions (MCHS), a dementia services provider offering care
consultation, caregiver education, home safety assessments, and linkage to
community resources. The pilot aimed to improve dementia knowledge within
CHAP and improve the quality of the community-based care being offered. With
heavily overlapping service areas and similar, low-income clientele with
multiple medical conditions, CHAP and MCHS found they were logical partners.
The pilot project began with staff
training. MCHS worked closely with the medical director of CHAP to develop
curricula for 10 advanced practice paramedics, 40-60 general EMS providers,
and all ED case management and social work staff at the hospital. They
identified three key topics: (1) prevalence of undiagnosed dementia, (2) use
of validated tools to detect dementia, and (3) knowledge of community
resources. This core knowledge is critical to the ability of health care
providers to serve people living with dementia.
All trainees received a 1-hour training
covering basic information on dementia and the Mini-Cog screening tool.
Advanced practice paramedics completed a 2-hour training on administering the
Mini-Cog and best practices in dementia care. MCHS social workers and
occupational therapists did “ride-alongs” with advanced practice paramedics,
and the paramedics similarly shadowed the MCHS clinicians on home visits. The
in-depth understanding of each other’s work from this shadowing facilitated
trust and close working relationships among the MCHS and CHAP team members.
Once training was complete, CHAP began
the process of identifying potential community paramedicine clients through
911 calls, referrals from the hospital, and outreach to senior housing
providers, who often call 911 for their residents. Potential participants
were screened by CHAP using the Mini-Cog; those with a positive screen who
were high utilizers of emergency services for non-emergency care were
eligible for the paramedicine program; they were also required to have an
informal caregiver who was willing to take part in education and care
coordination.
|
(continued)
|
Case
Study #3—Community
Paramedicine and Dementia Services (continued)
|
|
Enrollees received in-home medical
management, with oversight from a medical director, and were referred to
community resources by CHAP, while MCHS delivered dementia care education to
family members. The MCHS and CHAP teams held case conferencing calls twice a
month. This enabled comprehensive case management and avoided duplication of
services.
Many of the people who enrolled were
more seriously ill than anticipated and needed help determining their
end-of-life care preferences. A higher than expected number of enrollees were
referred to hospice services through this project. Medical providers often
fail to have these difficult conversations with patients about their goals of
care, options, and palliative approaches. Referral to hospice was considered
a successful outcome because it enabled patients to remain in their homes
according to their wishes.
In addition to the poor health of the
enrollees, the project encountered other challenges. Navigating family
dynamics and engaging family caregivers proved difficult in some cases and
required the skills of an experienced MCHS clinician. Families were often in
denial and lacked basic knowledge about dementia, which necessitated not only
caregiver training but basic dementia education.
Sharing data between CHAP and MCHS was
also challenging. Because they were holding case conferences and planning
care together, they needed to be able to share data, but each organization
also needed to maintain its own records, which required some duplication of
data entry. Initially, the project used care coordination software to try to
share information, but MCHS workers had personal rather than company-issued
cell phones, which created privacy concerns.
The pilot project is officially
complete. CHAP and MCHS continue to provide services to clients, but there is
no continuing dementia training for CHAP staff, and the MCHS and CHAP teams
do not meet to coordinate case management. The relationship that developed
between these two organizations over the course of the project remains
strong, however, and communication and cross-referrals continue.
|
Evaluation
Evaluating the impact of first responders’ dementia-related
activities is critical because it helps organizations make a case to leadership
and funders for continuing or expanding programs. The data that are most useful
to collect will depend on the program but may include outcomes such as reduced
rehospitalization rates; dollars spent or saved; changes in staff knowledge,
skills, or attitudes; number of people served; number of staff trained; and
hours spent on various types of first responder calls or cases.
The experts interviewed for this guide commented that it can be
difficult to obtain formal evaluation data from dementia training sessions. Training
time is often limited, and some first responders are reluctant to complete
evaluation forms. In other cases, first responders’ databases are not
configured to collect and track the most useful information and an initial
investment in technology is necessary. For example, community paramedicine
programs need to track a different set of measures than typical EMS, such as
hospitalization or rehospitalization rates, but although this information is
necessary to demonstrate the value of the work, it may take time to obtain the
necessary technology.
Challenges in Serving People Living with Dementia
Several challenges are faced by first responders and community
organizations when implementing programs to better serve and protect people
living with dementia, including program implementation challenges, limited resources,
and interagency communication.
Program Participation and Implementation
Enrolling people is sometimes a challenge for programs like
wandering prevention registries and community paramedicine.
• Programs
attempting to serve high-need people living alone with dementia have found that
it often takes a significant amount of time to establish rapport to enable
regular visits, and that once participants are enrolled, working with them
requires extensive clinical expertise. Families may not recognize that the
person has dementia, attributing the person’s behaviors to laziness,
stubbornness, or being difficult on purpose. This can make it difficult for
first responders to engage families or connect them with community
organizations that could offer appropriate supports.
• In
some communities, lack of trust in law enforcement can also be a barrier to
accepting assistance. Conversely, perceptions of their own role as an
“enforcer” rather than a “helper” may prevent some law enforcement officers
from embracing new approaches, even when agency leadership is on board.
• CP
programs may have difficulty getting EMS staff on board because they prefer the
excitement of emergency calls to the “nursing” role of community paramedicine.
Several programs have addressed this by creating one or a few designated CP
positions and inviting other interested staff to volunteer for the role.
Resource Limitations
Staffing and financial resources can also create challenges:
• Staff
turnover is a major challenge for numerous reasons. It creates the need to establish
new relationships with replacement staff and makes it difficult to keep a
positive focus on program maintenance and improvement. Experts commented on the
need to recruit new champions when existing champions leave and the challenge
of ongoing dementia education to keep pace with staff turnover.
• Resource
limitations—including the amount of time staff can spend on dementia-focused
interventions and the amount of money available for such programs—are a
foundational challenge. For example, many first responders have more than one
job, so committing to any additional activities like training beyond their
specified shift hours is especially difficult.
• Limited
options for reimbursement have posed a significant challenge to CP programs as
providers search for the financial resources necessary to provide the service.
There is some early exploration of insurance payments for CP services, but to
date, funds have mostly come from existing budgets (Abrashkin et al., 2016).
• Training
for law enforcement also requires an investment of staff time. Law enforcement
leaders suggest that these efforts can more than pay for themselves in more
efficient search and rescue operations and officer time saved through
partnership with community organizations.
Interagency Communication
Significant groundwork to develop communication channels is often
necessary for collaboration between first responders and community
organizations to be successful.
• Agencies
may have little understanding of each other’s day-to-day responsibilities and
roles, not knowing the skills and resources each can bring to the table, and
there is often a very different vocabulary used to describe similar situations.
Experts emphasized the importance of spending time with different partners and
simply learning about each organization and what it does.
• Technology
to support interagency communication can also be a challenge. Duplication of
data entry was a challenge mentioned by several projects: technology challenges
mean that each partner has to enter data in its own system and enter it again
in a separate system to share with a partner. Communication technology compatibility
can also be a problem; for example, some law enforcement officers use BlackBerries,
but many apps are not compatible with that platform.
Strategies for Success in Partnering with First Responders
Experts interviewed for this guide named several factors that can
help community organizations and first responders work together.
Seek Buy-in from Leadership
Talk to leaders in local government as a first step. Raising
awareness about dementia within the city or county government can greatly
enhance success in building community-wide support. Some governments may be
more focused than others on these types of issues, so it is important to be
able to demonstrate the relevance to local finances, planning, and resident
well-being.
First responder leadership also plays a key role in championing
dementia training efforts. Staff are more likely to recognize the importance of
this issue if leaders demonstrate a commitment (Alzheimer’s Aware et al.,
2015). There are a variety of ways to initiate relationships with leaders. A
personal connection between a community organization staff member and first
responder agency leader may facilitate an initial conversation. Fire chiefs,
EMS directors, and police chiefs may also have a family member or friend with
dementia, which helps them understand the importance of this issue. One expert
interviewed for this guide credited the county sheriff, who is passionate about
building community relationships, with making this type of partnership a major
focus of his agency.
Getting one leader’s support can make it easier to expand to
other agencies. For example, in a larger metropolitan area, one local police
department may refer a community organization to another area police department,
or there may be an opportunity to present to a larger body such as a police
chiefs’ association. “Word of mouth” is invaluable, as leaders share with their
peers the benefit that they have seen from dementia training and community partnerships.
Identify Champions within Agencies
Many interviewees emphasized the importance of identifying champions
within first responder agencies—not just leadership. Having an “insider” who
understands priorities and procedures makes it easier to introduce new training
programs or policies. Often community organizations conduct dementia training
themselves, but having an internal training officer or other staff at the first
responder agency who can lead or co-lead training is ideal, as peers tend to
engender greater trust. Some projects have used a team of trainers, with
representation from the community organization, APS, and law enforcement.
Champions may be those whose position relates to dementia or
training, such as law enforcement elder abuse units, training officers, or
community liaisons. Similarly, within EMS, it is beneficial to have one or two
people dedicated to providing community paramedicine. These are often
paramedics who volunteer for the role. Identifying those team members who are
most committed to the premise of community paramedicine helps build the success
of the program.
Champions who have personal experience with dementia can be some
of the strongest advocates for training and for building strong partnerships. Having
a family member or friend with dementia often enables people to better
recognize dementia when they see it in their day-to-day work or even to
initiate contact with a community organization for training.
Build on Existing Relationships
Start with what is already happening in your community: regular
meetings of community organizations; task forces that are addressing aging,
safety, or similar issues; or existing referral networks. Building on existing
activities and relationships is time-efficient. Simply introducing an agenda
item to an existing meeting can give members an opportunity to learn from each
other about what efforts are already taking place, to increase opportunities
for cross-referral, and to build the case for focused projects or partnerships.
One community was able to leverage a strong relationship between
its all-volunteer EMS service and residents to establish a successful community
paramedicine program. Another initiated dementia training for law enforcement
as an extension of a county-wide Alzheimer’s initiative that had been launched
by the board of supervisors. In other examples, existing networks of
government, social, and medical service providers have been leveraged to build
dementia capability (Shah et al., 2010).
Consider state-level organizations as well. There may be
professional associations for first responders that already mandate or provide
training to members. Building on this existing structure can greatly expand the
reach of your training program or other educational materials.
Meet Their Needs
Typically, first responders will not approach community
organizations for training or other assistance. Community organizations need to
make the case for why this topic is important and how education and tools can
help first responders do their work more effectively and efficiently. For
example, law enforcement officers tend to understand right away that dementia
is an issue, but they may not realize that there is something they can do about
it. EMS providers are eager to learn but need more education about dementia.
Coming equipped with solutions, statistics, and evidence of positive outcomes
can help build the case for involvement. Benefits to emphasize include the
following:
·
Potential for reduced costs
Partnering with community
organizations can reduce first responders’ costs. For example, providing
families with tips on wandering prevention can save law enforcement thousands
of dollars in search and rescue costs. Similarly, partnerships between community
organizations and CP providers show promise in reducing rehospitalization,
which is an incentive for hospital systems that own EMS. Elder abuse units in law
enforcement can work more efficiently by partnering with APS and other community
organizations to help address an individual’s ongoing needs and therefore
eliminate crisis calls.
·
Improved morale
Law enforcement officers
interviewed for this project emphasized how proper training and systems for
managing dementia-related situations can make their work more fulfilling.
Instead of visiting the same home over and over for emergency situations, they
can link people with appropriate resources so their needs are addressed
proactively.
·
Improved community relations
First responders are often eager
to partner with other organizations to enhance community relations. Working on
programs such as wandering prevention or welfare checks for isolated older
adults can demonstrate a commitment to the well-being of community members.
Policies and Funding Related to First Responders and Dementia
Community organizations that want to begin partnering with first
responders should become familiar with legislation and policies that may affect
program funding and training requirements in their state and local community. Public
policies have been established at the state and federal levels to govern how
first responders engage with people living with dementia. This includes the
development of laws, regulations, and public programs to train law enforcement
to locate missing vulnerable adults.
State Plan Mandates for Training
|
The Alzheimer’s Association has assembled all states’
Alzheimer’s Disease Plans at:
http://act.alz.org/site/DocServer/TRAINING.pdf?docID=4655
|
Nearly every state and territory has published a State Government
Alzheimer’s Disease Plan (Alzheimer’s Association, 2018b). The plans for 30
states and the District of Columbia include specific recommendations for
training first responders (Alzheimer’s
Association, n.d., 3). Although these mandates may set an expectation
for training, few provide recommendations for curricula, minimum number of
hours, or funding to implement these recommendations.
State Training Standards
A 2015 nationwide survey of dementia training requirements for
law enforcement, EMS, APS, and ombudsman programs in all 50 states and Puerto
Rico and the District of Columbia (Burke & Orlowski, 2015) revealed that:
• 10
states provide some dementia training standards for law enforcement personnel;
• only
1 state mandates such training for EMS; and
• 6
states require dementia training for either APS staff or ombudsman.
A few states have laws requiring dementia training for law
enforcement personnel. Colorado, Maryland, Massachusetts, New Jersey, Oregon,
South Carolina, and Virginia incorporated training requirements in their
Missing Adult Program mandates. Florida, Indiana, New Hampshire, and Oklahoma
have broad-based dementia training requirements for law enforcement; of these,
only Indiana and Oklahoma have laws that specify the required number of hours
for training.
At the time of the nationwide survey, Connecticut was the only
state with a statute requiring dementia training for EMS. EMS providers in
Connecticut must complete training that includes a module covering Alzheimer’s
disease and dementia symptoms and care as part of their 3-year recertification
(Burke & Orlowski, 2015).
Federal Patient Alert Programs
Congress authorized funding from FY1996 through FY2015 for the
Missing Alzheimer’s Disease Patient Alert program under the Violent Crime
Control and Law Enforcement Act of 1994. The purpose of the program was to
locate and respond to those with dementia who go missing. Congress provided
appropriations for the program of $750,000 to $2 million annually over the
course of the program to the Department of Justice’s Bureau of Justice Assistance (BJA) within the Office of
Justice Programs. BJA was responsible for administering the funds through
grants. Grants were awarded under the program to a variety of entities,
including the IACP who used
these funds to develop a guide
to state alert systems
for missing seniors and adults. Although the program has ended, BJA’s Alzheimer’s Aware and IACP continue to provide many resources related to first
responders and dementia.
State-Based Vulnerable Missing Adult Programs
People living with dementia may wander or try to leave their home
without a companion; this can happen at any point in the disease and is a
safety concern when they are confused about where they are in terms of place or
time. See the Section on Wandering for more
information and the Section on Preventing
and Managing Wandering Incidents for interventions to address this problem.
Almost all states have an alert system to help locate vulnerable
missing adults, including those living with dementia. An article by Wasser and
Fox (2013) indicated that 37 states had “Silver Alert” programs that broadcast alerts to law enforcement when
vulnerable adults go missing, or pending legislation to adopt such programs. A
search of state government websites found that since that time, most
other states have adopted similar alert systems. However, only six states include dementia
training requirements as part of their missing person programs (Burke
& Orlowski, 2015).
Project Methodology
We used two approaches to gather information for this guide.
First, we conducted a literature review of peer-reviewed and gray literature.
We identified a total of 36 published articles and determined that 13 were
relevant. The gray literature search included professional websites, government
agencies, and other nonprofit organizations related to law enforcement, APS and
elder abuse, firefighters, and EMS. We identified an additional 11 reports and
publications through the gray literature search. The availability of information
on this topic is limited, and very few studies or organizations have considered
the question of how community organizations and first responders can most
effectively partner.
The second way we gathered information was through interviews
conducted in June 2018 with 13 subject matter experts. We selected experts who
had experience with various projects and partnerships involving first
responders and community organizations to better serve people living with
dementia. The experts were also chosen to represent diversity of rural/urban
areas, regions of the country, and types of first responders involved in their
projects. These subject matter experts are listed on the Acknowledgements page of this guide.
Resources for First Responders and Organizations
Working with First Responders
The National Alzheimer’s and Dementia Resource
Center provides support to
ACL-funded grantees in developing, implementing and evaluating dementia
services. Many grants, including several referenced in
this guide, have implemented First Responder initiatives. Information on grant projects is available here.
Resource Cards and Brochures
•
10
Communication Tips —Tips for first
responders in dealing with someone who may be wandering. Source:
Alzheimer Society Canada
•
10
Warning Signs a Driver May Have Alzheimer’s for law enforcement. Source: International Association of Chiefs of
Police (IACP)
•
Evaluative
Questions for Caregivers: Investigating a Missing Person with Alzheimer’s
Disease or Dementia for law
enforcement. Source: IACP
•
Quick
Tips for First Responders A
brochure with tips on firearm safety, wandering, driving, abuse and neglect,
shoplifting, and disaster response. Source: Alzheimer’s Association
Training
• Alzheimer’s Disease and
Dementia Care 6-hour live seminar for first responders covering many topics
including: dementia basics; communication; behavioral symptoms; driving;
recognizing abuse and neglect; and diversity and cultural competence. Source: National
Council of Certified Dementia Practitioners
• Approaching Alzheimer’s
Free online training videos for first responders covering six topics: dementia
basics; wandering; driving; abuse/neglect; shoplifting; and disaster response.
Source: Alzheimer’s Association
• Driver Orientation Screen for
Cognitive Impairment Driving assessment questionnaire and video trainings
for law enforcement. Source: TREDS—University of California-San Diego School of
Medicine and Calit2
• MedicAlert Law Enforcement Agency Portal
(LEAP) Provides training for law enforcement officers on wandering
emergencies and free MedicAlert jewelry and services to community members who
are at risk for wandering. Source: MedicAlert
• Certified
First Responder Dementia Trainer program This
12-hour, self-led seminar provides certification to train other first
responders on dementia. Source: National Council of Certified Dementia
Practitioners
• Training
videos for law enforcement The videos consist of four short clips,
totaling 15 minutes, which portray law enforcement officers encountering
individuals with dementia during standard patrol: (1) a traffic stop; (2) a
wandering event; (3) a daughter who has called 911 for help with her very
agitated/aggressive mother with dementia; and (4) a woman with dementia who has
called 911 thinking someone has tried to rob her home. The four separate videos
have been combined into one on this link.
Source: Alzheimer’s Orange County
• Training videos and
webinars Four videos and two training webinars. Topics include driver
assessment, missing person (on foot or by car), search protocols, three stages
of Alzheimer’s, and situations in which law enforcement or first responders
might encounter someone with Alzheimer’s. Source: IACP
Guides
•
Dementia
Learning Resource for Ambulance Staff A manual provides EMS staff with basic information on dementia,
communication techniques, behavioral symptoms, delirium, and pain. Source: Dementia
Partnerships
•
First
Responder Handbook Provides information
on how to recognize possible dementia, communicate with and respond to various
situations such as abuse, hoarding or accidents. Source: Alzheimer Society
Canada
•
A
Guide to Law Enforcement on Voluntary Registry Programs for Vulnerable
Populations For law enforcement:
Provides information and resources for starting a voluntary registry program. Source:
IACP
Model Policy for Law Enforcement
• Missing
Persons with Alzheimer’s Disease Model policy for handling missing people
living with dementia for law enforcement. Source: IACP
Public Awareness
• PowerPoint
presentation and script
This presentation on wandering can be used by law enforcement to
educate the public on wandering. It includes a script, background information
for the presenter, a news release, and a guide for caregivers. Source: McGruff
Safe Kids
• Billboard designs Various sizes of
billboard designs that can be used by law enforcement agencies, local
governments and other community groups. Source: Alzheimer’s Aware
•
Encouraging
a Community Response to Alzheimer’s Disease: Model Local Public Information
Campaign This document provides an
outline that can be used to assist in the development of a public information
campaign. Source: Alzheimer’s Aware
• Standard
website language Provides language that law enforcement agencies can use on
their websites to inform the community about dementia and related safety. Source:
Alzheimer’s Aware
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