Alzheimer's Association Dementia Care Practice Recommendations Supplemental issue of The ...

152 Pages·2017·5.63 MB·English

by  Alzheimer's Association

Alzheimer’s Association® Dementia
Care Practice Recommendations
Editor-in-Chief:
Suzanne Meeks, PhD

Supplement Editors:
Sam Fazio, PhD
Douglas Pace, NHA

Supplement Associate Editors:
Beth A. Kallmyer, MSW
Katie Maslow, MSW
Sheryl Zimmerman, PhD
ACKNOWLEDGMENTS
The Alzheimer’s Association would like to acknowledge individuals living with dementia, their families and
care partners, as well as the professionals who provide daily care and support.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer research, care and sup-
port. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and
enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain
health.
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THE GERONTOLOGIST
A Journal of The Gerontological Society of America
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The Gerontologist
cite as: Gerontologist, 2018, Vol. 58, No. S1, S1–S9
doi:10.1093/geront/gnx182
Editorial
Alzheimer’s Association Dementia Care Practice
Recommendations
Sam Fazio, PhD,1,* Douglas Pace, NHA,1 Katie Maslow, MSW,2 Sheryl Zimmerman,
PhD,3 and Beth Kallmyer, MSW1
1Alzheimer’s Association, Chicago, Illinois. 2The Gerontological Society of America, Washington, District of Columbia. 3Cecil
G. Sheps Center for Health Services Research and the School of Social Work, The University of North Carolina at Chapel
Hill.
*Address correspondence to: Sam Fazio, PhD, Alzheimer’s Association, 225 N Michigan Ave, Chicago, IL 60601. E-mail: [email protected]
Background and Introduction home, compared with only 4% of the general population
(Arrighi, Neumann, Lieberburg, & Townsend, 2010).
Alzheimer’s disease is a degenerative brain disease and
Since its inception, the Alzheimer’s Association has
the most common cause of dementia. Dementia is a syn-
been a leader in outlining principles and practices of qual-
drome—a group of symptoms—that has a number of
ity care for individuals living with dementia. Early on, the
causes. The characteristic symptoms include difficulties
Guidelines for Dignity described goals for quality care, fol-
with memory, language, problem solving, and other cogni-
lowed by Key Elements of Dementia Care and the Dementia
tive skills that affect a person’s ability to perform everyday
Care Practice Recommendations, as more evidence became
activities (Alzheimer’s Association, 2017).
available. In this new iteration, the Alzheimer’s Association
According to the Alzheimer’s Association 2017
Dementia Care Practice Recommendations outline recom-
Alzheimer’s Disease Facts and Figures, an estimated 5.5
mendations for quality care practices based on a compre-
million Americans are living with Alzheimer’s demen-
hensive review of current evidence, best practice, and expert
tia. One in 10 people aged 65 years and older (10%)
opinion. The Dementia Care Practice Recommendations
has Alzheimer’s dementia, and almost two-thirds of
were developed to better define quality care across all
Americans with Alzheimer’s are women. In addition to
care settings, and throughout the disease course. They are
gender differences, Alzheimer’s dementia affects racial
intended for professional care providers who work with
and ethnic groups disproportionately. Compared to older
individuals living with dementia and their families in resi-
white adults, African Americans are about twice as likely
dential and community-based care settings.
to have Alzheimer’s or other dementias, and Hispanics
With the fundamentals of person-centered care as the
are approximately 1.5 times as likely (Alzheimer’s
foundation, the Dementia Care Practice Recommendations
Association, 2017).
(see Figure 1) illustrate the goals of quality dementia care
Almost 60% of older adults with Alzheimer’s or other
in the following areas:
dementias reside in the community, only 25% of who live
alone. As their disease progresses, people with Alzheimer’s • Person-centered care
or other dementias generally receive more care from fam- • Detection and diagnosis
ily members, unpaid caregivers, and community-based and • Assessment and care planning
residential care providers. Forty-two percent of residents • Medical management
in assisted living communities have Alzheimer’s or other • Information, education, and support
dementias (Caffrey et al., 2012; Zimmerman, Sloane, & • Ongoing care for behavioral and psychological symptoms
Reed, 2014), and 61% of nursing home residents have mod- of dementia, and support for activities of daily living
erate or severe cognitive impairment (Centers for Medicare • Staffing
and Medicaid Services, 2016). Further, by age 80, 75% of • Supportive and therapeutic environments
people with Alzheimer’s dementia are admitted to a nursing • Transitions and coordination of services
© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. S1
For permissions, please e-mail: [email protected].
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S2 The Gerontologist, 2018, Vol. 58, No. S1
abilities, likes, and dislikes—both past and present.
This information should inform every interaction and
experience.
2. Recognize and accept the person’s reality
It is important to see the world from the perspective
of the individual living with dementia. Doing so rec-
ognizes behavior as a form of communication, thereby
promoting effective and empathetic communication
that validates feelings and connects with the individual
in his/her reality.
3. Identify and support ongoing opportunities for mean-
ingful engagement
Every experience and interaction can be seen as an
opportunity for engagement. Engagement should be
meaningful to, and purposeful for, the individual living
with dementia. It should support interests and prefer-
ences, allow for choice and success, and recognize that
even when the dementia is most severe, the person can
Figure 1. Dementia Care Practice Recommendations. experience joy, comfort, and meaning in life.
4. Build and nurture authentic, caring relationships
This article highlights the recommendations from all 10 Persons living with dementia should be part of rela-
articles in the Supplement Issue of The Gerontologist tionships that treat them with dignity and respect, and
entitled, Alzheimer’s Association Dementia Care Practice where their individuality is always supported. This type
Recommendations. Each article provides more detail about of caring relationship is about being present and con-
the specific recommendations, as well as the evidence and centrating on the interaction, rather than the task. It is
expert opinion supporting them. This supplement includes about “doing with” rather than “doing for” as part of a
two areas that generally are not included in recommen- supportive and mutually beneficial relationship.
dations for providers in community and residential care 5. Create and maintain a supportive community for indi-
settings, although these topics are frequently included in viduals, families, and staff
recommendations for physicians and other medical care A supportive community allows for comfort and creates
providers—detection and diagnosis and ongoing medical opportunities for success. It is a community that values
management. Different from existing recommendations each person and respects individual differences, cel-
on these two topics, the articles are written for nonphysi- ebrates accomplishments and occasions, and provides
cian care providers and address what these providers can access to and opportunities for autonomy, engagement,
do to help with these important aspects of holistic, per- and shared experiences.
son-centered dementia care. Throughout all of the articles, 6. Evaluate care practices regularly and make appropriate
Alzheimer’s disease and dementia are used interchangeably. changes
Care partner is used to refer to those people supporting Several tools are available to assess person-centered
individuals in the early stages of dementia, and caregivers is care practices for people living with dementia. It is
used to refer to those supporting individuals in the middle important to regularly evaluate practices and models,
and late stages; care provider is used for paid professionals. share findings, and make changes to interactions, pro-
Lastly, the closing article by Thornhill and Conant (2018) grams, and practices as needed.
outlines the interplay of policy and practice rounds out the
supplement.
The Alzheimer’s Association is hopeful that these
Practice Recommendations for Detection and
Recommendations will greatly inform and substantially
Diagnosis (Maslow & Fortinsky, 2018)
influence dementia care standards, training, practice, and
policy.
1. Make information about brain health and cognitive
aging readily available to older adults and their families
Practice Recommendations for Person-Centered Within their scope of practice and training, nonphysi-
Care (Fazio, Pace, Flinner, & Kallmyer, 2018) cian care providers who work with older adults and
their families in community or residential care settings
1. Know the person living with dementia should either talk with them or refer them to other
The individual living with dementia is more than a experts for information about brain health, changes
diagnosis. It is important to know the unique and com- in cognition that commonly occur in aging, and the
plete person, including his/her values, beliefs, interests, importance of lifestyle behaviors and other approaches
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to maintain brain health. They should suggest print and • the nonphysician care provider has been trained to
online sources of additional information as appropriate. use the test; and
2. Know the signs and symptoms of cognitive impairment, • required consent procedures are known and used;
that signs and symptoms do not constitute a diagnosis and
of dementia, and that a diagnostic evaluation is essen- • there is an established procedure for offering a
tial for diagnosis of dementia referral for individuals who score below a preset
All nonphysician care providers who work with older score on the test to a physician for a diagnostic
adults in community or residential care settings should evaluation.
be trained to recognize the signs and symptoms of cog- 6. Encourage older adults whose physician has recom-
nitive impairment. They should be trained that signs and mended a diagnostic evaluation to follow through on
symptoms are not sufficient for a diagnosis of dementia the recommendation
and that a diagnostic evaluation must be conducted by Within their scope of practice, training, and agency pro-
a physician who can make the diagnosis. cedures, if any, nonphysician care providers who work
3. Listen for concerns about cognition, observe for signs with older adults in community or residential care set-
and symptoms of cognitive impairment, and note tings and are aware that an older adult’s physician has
changes in cognition that occur abruptly or slowly over recommended a diagnostic evaluation should encour-
time age the older adult and family, if appropriate, to follow
Depending on their scope of practice, training, and through on the recommendation. They should talk with
agency procedures, if any, nonphysician care providers the older adult and family about the reasons for and
who work with older adults in community or residen- importance of getting a diagnostic evaluation and pro-
tial care settings should listen for older adults’ concerns vide print and online sources of additional information.
about dementia and observe for signs and symptoms 7. Support better understanding of a dementia diagnosis
of cognitive impairment and changes in cognition. As Within their scope of practice, training, and agency pro-
appropriate and in accordance with agency procedures cedures, if any, nonphysician care providers who work
and respect for individuals’ privacy, nonphysician care with older adults in community or residential care set-
providers should communicate with coworkers about tings and are aware that the older adult has received a
observed signs and symptoms, changes in cognition, dementia diagnosis but does not understand the diagno-
and concerns of older adults and family members about sis (or the older adult’s family does not understand the
the older adult’s cognition. Depending on their scope of diagnosis) should encourage the older adult and family
practice and training, they should encourage the older to talk with the diagnosing physician. The care provider
adult and family to talk with the individual’s physician should also offer print and online sources of additional
about the signs and symptoms, changes in cognition, information as appropriate.
and older adult and family concerns.
4. Develop and maintain routine procedures for detection
of cognition and referral for diagnostic evaluation
Practice Recommendations for Person-Centered
Administrators of organizations that provide services
Assessment and Care Planning (Molony,
for older adults in community or residential care set-
Kolanowski, Van Haitsma, & Rooney, 2018)
tings and self-employed care providers should develop
and maintain routine procedures for assessment of 1. Perform regular, comprehensive person-centered assess-
cognition. They should, at a minimum, maintain an ments and timely interim assessments
up-to-date list of local memory assessment centers and Assessments, conducted at least every 6 months, should
physicians, including neurologists, geriatricians, and prioritize issues that help the person with dementia
geriatric psychiatrists, who can provide a diagnostic to live fully. These include assessments of the indi-
evaluation for older adults who do not have a primary vidual and care partner’s relationships and subjective
care physician or have a primary care physician who experience and assessment of cognition, behavior, and
does not provide such evaluations. Ideally, nonphysician function, using reliable and valid tools. Assessment is
care providers and organizations that work with older ongoing and dynamic, combining nomothetic (norm-
adults should partner with physicians, health plans, based) and idiographic (individualized) approaches.
and health care systems to establish effective referral 2. Use assessment as an opportunity for information gath-
procedures to ensure that older adults with signs and ering, relationship-building, education, and support
symptoms of cognitive impairment can readily receive a Assessment provides an opportunity to promote mutual
diagnostic evaluation. understanding of dementia and the specific situation
5. Use a brief mental status test to detect cognitive impair- of the individual and care partners, and to enhance
ment only if: the quality of the therapeutic partnership. Assessment
• such testing is within the scope of practice of the should reduce fear and stigma and result in referrals to
nonphysician care provider, and community resources for education, information and
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support. Assessment includes an intentional preassess- 2. Seek to understand the role of medical providers in the
ment phase to prepare the assessor to enter the experi- care of persons living with dementia and the contribu-
ence of the person living with dementia and their care tions that they make to care
partner(s). Nonmedical care providers and family caregivers
3. Approach assessment and care planning with a collab- should work with medical providers towards develop-
orative, team approach ing a shared vision of care to support the person living
Multidisciplinary assessment and care planning are with dementia.
needed to address the whole-person impact of demen- 3. Know about common comorbidities of aging and
tia. The person living with dementia, care partners, dementia and encourage persons living with dementia
and caregivers are integral members of the care plan- and their families to talk with the person’s physician
ning team. A coordinator should be identified to inte- about how to manage comorbidities at home or in resi-
grate, document and share relevant information and to dential care settings
avoid redundancy and conflicting advice from multiple Common comorbidities can negatively impact a per-
providers. son living with dementia, and conversely, a diagnosis
4. Use documentation and communication systems to of dementia can make the treatment and management
facilitate the delivery of person-centered information of comorbid conditions quite challenging. Nonmedical
between all care providers care providers should encourage persons living with
Comprehensive, high-quality assessment is of benefit dementia and their families to report acute changes in
only if it is documented and shared with care provid- health and function to the person’s physician, and to let
ers for use in planning and evaluating care. Information the physician know about difficulties they encounter in
must be current, accessible, and utilized. managing acute and chronic comorbidities at home or
5. Encourage advance planning to optimize physical, psy- in a residential care facility.
chosocial, and fiscal wellbeing and to increase aware- 4. Encourage persons living with dementia and their fami-
ness of all care options, including palliative care and lies to use nonpharmacologic interventions for common
hospice behavioral and psychological symptoms of dementia
Early and ongoing discussion of what matters, includ- first
ing values, quality of life and goals for care, are essen- Increasing evidence suggests nonpharmacological inter-
tial for person-centered care. The person living with ventions are effective at managing behavioral and psy-
dementia’s preferences and wishes should be honored chological symptoms of dementia. Community care
in all phases of the disease, even when proxy decision providers should encourage persons with dementia and
making is required. The individual and family should their families to try these interventions first before con-
be referred to health care team members to provide sidering pharmacological treatments.
ongoing education and support about symptom man- 5. Understand and support the use of pharmacological
agement and palliative care. interventions when they are necessary for the person’s
safety, well-being, and quality of life
Although nonpharmacological interventions are pre-
Practice Recommendations for Medical ferred, there are times when pharmacological treat-
Management (Austrom, Boustani, & LaMantia, ment is warranted for behavioral and psychological
2018) symptoms. It is important for community care pro-
viders to understand that pharmacological treatment
1. Take a holistic, person-centered approach to care and can have value for the person living with dementia
embrace a positive approach to the support for persons in certain situations and to help them and their fam-
living with dementia and their caregivers that acknowl- ily caregiver to accept such treatment. Community
edges the importance of individuals’ ongoing medical care providers should also understand the general
care to their well-being and quality of life principles for starting and more importantly, ending
Nonphysician care providers must adopt a holistic pharmacological treatments and encourage the person
approach to providing care and ongoing support to the living with dementia and family caregivers to ask their
person living with dementia and their family caregiv- medical providers for regular medication reviews and
ers. They should work to reduce existing barriers to to consider the discontinuation of medications when
coordination of medical and nonmedical care and sup- appropriate.
port. Adopting a positive approach towards care can 6. Work with the person living with dementia, the fam-
reduce real or perceived messages of hopelessness and ily, and the person’s physician to create and implement
helplessness and replace these with positive messages a person-centered plan for possible medical and social
and an approach that encourages persons living with crises
dementia and their caregivers to seek support and care It is helpful for persons living with dementia and their
over the course of the disease. caregivers to have a plan in place should a medical or
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social crisis occur, such as an illness, hospitalization or with dementia do not seek out or accept support from
the death of a caregiver. Having a plan in place will nonfamilial sources. Highlighting multicultural issues
help the person’s physician and community care pro- when training professionals and providing guidance for
viders provide care and support that reflects the prefer- reaching out to these special populations will lead to
ences of the person living with dementia and reduce more effective programs that embrace the unique needs
stress for family members and care providers who have of all care partners.
to make decisions for the person during a crisis. 4. Ensure education, information, and support programs are
7. Encourage persons living with dementia and their fam- accessible during times of transition
ilies to start end-of-life care discussions early There are many transitional points throughout the dis-
Persons living with dementia and their caregivers ease trajectory that have variable effects on both care
should understand options available for care during partners. For example, transitioning from early to mid-
the later stages of Alzheimer’s disease. Having discus- dle to late stage often introduces new symptoms and
sions early with the person’s physician and other care behaviors that, in turn, increase care partners’ ques-
providers and communicating the preferences of the tions and concerns about what to expect in the future.
person and family across care settings can make the Progression through the various stages of dementia
transitions during the progression of dementia more also brings about other types of transitions, such as
manageable. changes in living arrangements or care providers (i.e.,
from in-home to nursing home care). Providing educa-
tion, information, and support that honor the individ-
ual with dementia’s values and preferences during these
Practice Recommendations for Information,
transitions will be reassuring to caregivers as they make
Education, and Support for Individuals Living
hard choices on behalf of the individual living with
with Dementia and their Caregivers (Whitlatch &
dementia.
Orsulic-Jeras, 2018)
5. Use technology to reach more families in need of educa-
1. Provide education and support early in the disease to tion, information, and support
prepare for the future Supportive interventions and programs that use tech-
Intervening during the early stages creates opportunities nology (such as Skype, Facetime, etc.) to reach those
to identify, meet, and, in turn, honor the changing and in need of services are expectedly on the rise. As tech-
future care needs and preferences of individuals living nology continues to advance and become more access-
with dementia and their family caregivers. Discussing the ible and reliable, delivering programs using electronic
individual’s care values and preferences early in the disease devices (computer, table, smart phone) could help reach
can aid in planning during the moderate and advanced more families. These programs would be especially use-
stages, as well as at end of life. Early intervention gives ful in rural communities where caregivers and individu-
individuals living with dementia a voice in how they are als living with dementia are often isolated with little
cared for in the future, while giving their caregivers piece access to supportive services.
of mind when making crucial care-related decisions.
2. Encourage care partners to work together and plan
together Practice Recommendations for Care of Behavioral
In recent years, interventions have been developed that and Psychological Symptoms of Dementia (BPSD)
bring together individuals living with dementia and their (Scales, Zimmerman, & Miller, 2018)
family caregivers, rather than working with each person
separately. This person-centered approach supports, pre- 1. Identify characteristics of the social and physical envir-
serves, and validates the individual living with dementia’s onment that trigger or exacerbate behavioral and psy-
care values and preferences while acknowledging the con- chological symptoms for the person living with dementia
cerns, stressors, and needs of the caregiver. By discussing Behavioral and psychological symptoms of dementia
important care-related issues earlier on, the individual (BPSDs) result from changes in the brain in relation to
with dementia’s desires and wishes for their own care will characteristics of the social and physical environment;
remain an important part of their caregiver’s decision- this interplay elicits a response that conveys a reaction,
making process as the care situation changes. stress, or an unmet need, and affects the quality of life
3. Build culturally sensitive programs that are easily adapt- of the person living with dementia. The environmental
able to special populations triggers of BPSDs and responses to them differ for each
It is very important to design effective evidence-based person, meaning that assessment must be individualized
programming that is sensitive to the unique circum- and person-centered.
stances of families living with dementia, such as minority, 2. Implement nonpharmacological practices that are per-
LGBT, and socially disadvantaged populations. However, son-centered, evidence-based, and feasible in the care
many minority or socially disadvantaged families living setting
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Antipsychotic and other psychotropic medications 3. When providing support for dressing, attend to dignity,
are generally not indicated to alleviate BPSDs, and so respect, and choice; the dressing process; and the dressing
nonpharmacological practices should be the first-line environment
approach. Practices that have been developed in resi- In general, people living with dementia are more able to
dential settings and which may also have applicability dress themselves independently if, for example, they are
in community settings include sensory practices, psy- provided selective choice and simple verbal instructions,
chosocial practices, and structured care protocols. and if they dress in comfortable, safe areas.
3. Recognize that the investment required to imple- 4. When providing support for toileting, attend to dignity
ment nonpharmacological practices differs across care and respect; the toileting process; the toileting environ-
settings ment; and health and biological considerations
Different practices require a different amount of invest- In general, people living with dementia are more able
ment in terms of training and implementation, special- to be continent if, for example, they are monitored for
ized caregiver requirements, and equipment and capital signs of leakage or incontinence, have regularly sched-
resources. Depending on the investment required, some uled bathroom visits and access to a bathroom that is
practices developed in residential settings may be feas- clearly evident as such, and avoid caffeine and fluids in
ible for implementation by caregivers in home-based the evening.
settings. 5. When providing support for eating, attend to dignity,
4. Adhere to protocols of administration to ensure that respect and choice; the dining process; the dining environ-
practices are used when and as needed, and sustained in ment; health and biological considerations; adaptations
ongoing care and functioning; and food, beverage and appetite
Protocols of administration assure that there is a In general, people living with dementia are more likely
“guideline” for care providers as they strive to alleviate to eat if, for example, they are offered choice, dine with
BPSDs. These protocols may evolve over time, respon- others and in a quiet, relaxing, and homelike atmos-
sive to the particular components of the practice that phere, maintain oral health, are provided adaptive food
are most effective for the person living with dementia. and utensils, and offered nutritionally and culturally
5. Develop systems for evaluating effectiveness of prac- appropriate foods.
tices and make changes as needed
The capacity and needs of persons living with dementia
evolve over time, and so practices to alleviate BPSDs
Practice Recommendations for Staffing (Gilster,
also may need to evolve over time. Therefore, it is neces-
Boltz, & Dalessandro, 2018)
sary to routinely assess the effectiveness of the practice
and, if necessary, adapt it or implement other evidence- 1. Provide a thorough orientation and training program
based practices. for new staff, as well as ongoing training
A comprehensive orientation should be provided that
includes the organization’s vision, mission and values,
Practice Recommendations for Support of high performance expectations, and person-centered
Activities of Daily Living (ADLs) (Prizer & dementia training. This training is essential for new
Zimmerman, 2018) staff, and should be included in ongoing education for
all staff members.
1. Support for ADL function must recognize the activity, 2. Develop systems for collecting and disseminating per-
the individual’s functional ability to perform the activ- son-centered information
ity, and the extent of cognitive impairment It is important that all staff know the person living with
Dementia is a progressive disease, accompanied by pro- dementia as an individual. Establish procedures for
gressive loss in the ability to independently conduct ADLs. collecting person-centered information that includes
Needs for supportive care increase over time—such as choices, preferences, and life history. It is also essen-
beginning with support needed for dressing, and later toi- tial that an effective process be developed to share this
leting, and later eating—and must address both cognitive information with all staff.
and functional decline as well as remaining abilities. 3. Encourage communication, teamwork, and interdepart-
2. Follow person-centered care practices when providing mental/interdisciplinary collaboration
support for all ADL needs An organization should promote staff participation
Not only are dignity, respect, and choice a common theme and interdepartmental/ interdisciplinary collaboration
across all ADL care, but the manner in which support through routinely scheduled inservice programs and
is provided for functionally-specific ADLs must attend to meetings. Training is most effective when designed to
the individualized abilities, likes, and dislikes of the per- include ongoing education, communication and sup-
son living with dementia. port. Offering inservices and conducting meetings on
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