Neuropsychiatric Symptoms Associated with Alzheimer’s Toolkit
As frontline providers, PAs practice in every medical setting and specialty, and are likely to treat patients with dementia experiencing neuropsychiatric symptoms (NPS). As the number of patients living with dementia increases, the resources in this toolkit are available to help PAs recognize, diagnose, and treat patients exhibiting NPS.
Demographics of Alzheimer’s Disease in the United States
~6.9million
Americans who are aged >65 years are living with Alzheimer’s disease (AD) in the U.S. in 20241
- This is about 1 in 9 people
- 73% of people living with AD are age 75 years or older
- Almost 2/3 of people with AD are women
- ~50% of Medicare beneficiaries are not informed they have been diagnosed with AD
- AD more common in Non-Hispanic Black and Hispanic older adults vs. White adults
- Underdiagnosis is more common among Black and Hispanic older adults
Up to 98%
of people with dementia experience neuropsychiatric symptoms (NPS)2
Core Neuropsychiatric Symptoms (NPS), which are also known as Behavioral and Psychological Symptoms of Dementia (BPSD) include:
- Apathy, agitation, aggression, depression/anxiety, sleep disorders, psychosis (hallucinations and/or delusions)
- Additional NPS include appetite/eating issue, motor disturbance, and disinhibition
- NPS can be the 1st symptoms of AD, preceding cognitive/memory impairments
General Risks and Consequences of NPS
Increased morbidity
Increased mortality risk
Greater carepartner stress and burnout
Earlier need for long-term care placement
FAQs on Neuropsychiatric Symptoms (NPS)
- Neuropsychiatric Symptoms (AKA Behavioral and Psychological Symptoms of Dementia [BPSD]) include apathy, agitation/aggression, anxiety, depression, and psychotic symptoms (delusions/hallucinations).
- Also included are sleep disorders, eating problems, and disinhibition gait/motor disturbances (pacing, wandering).
Up to 98% of patients with Alzheimer’s Disease (AD) eventually exhibit at least one NPS.
Some NPS can occur during mild cognitive impairment (MCI); they can precede the cognitive and memory impairments characteristic of AD; or they can appear anytime throughout the course of the disease.
ISTAART criteria (2017): “a substantial, clear change from patient’s typical behavior or personality in domains of apathy, affective dysregulation, difficulties with impulse control, social inappropriateness, abnormal perception, and thought of content for >6 months.”
- Use available screening tools for specific symptoms, or simplify by identifying ~3 key questions and integrating them into routine office visits.
- Follow up or refer positive screens to a specialist for more comprehensive evaluation.
- Increased morbidity
- Increased risk of mortality
- Increased need for early long-term placements (e.g. nursing home, memory care unit)
- Faster care partner burnout
- Increased risk hospitalization
- All guidelines recommend using nonpharmacologic interventions first before medications.
- Specific interventions depend on the NPS and can include:
- Developing and maintaining routines
- Distraction and de-escalation techniques
- Maintaining hydration and appropriate nutrition
- Developing good sleep hygiene
- Learn more in the Nonpharmacologic Interventions for NPS article.
Many medications used to treat anxiety, depression, agitation and sleep disorders are not indicated (and some even carry black box warnings) for use in this population because of the risks. Nevertheless, many drugs are used off-label under close monitoring.
Learn more in the Pharmacologic Approaches in the Management of Neuropsychiatric Symptoms in Alzheimer’s Disease (AD) article.
- Nonpharmacologic interventions are recommended as first-line treatments.
- Minimize as many triggering factors as possible.
- Use oral (vs IM or IV) second-generation antipsychotic medications if necessary.
- Learn more in the Agitation in the ED and Urgent Care Setting article.
- Patients with early-stage AD likely can continue driving, but as the disease progresses driving capabilities should be evaluated by the DMV.
- Clinicians should be aware of their state’s laws regarding requirements for reporting a patient’s diagnosis of AD to the DMV.
- Learn more in the Alzheimer’s Disease and Driving article.
- Patients often are diagnosed in primary care settings, referred to specialty care as needed, and returned to primary care providers for continued ongoing care.
- Arrangements are needed to provide access to patient records between the various providers.
- Shared visits may ease the transition between providers, whenever possible.
- Telehealth visits may also be an option when available.
Articles
Additional Resources
NPS Screening Tools
- Agitation in Alzheimer’s Screener for Caregivers (AASC)
This structured assessment tool developed by Otsuka helps care partners identify behaviors and feelings associated with agitation in individuals they care for and can discuss with their provider. - The Neuropsychiatric Inventory Questionnaire
(NPI-Q) The NPI-Q is designed to be a self-administered questionnaire completed by informants about patients for whom they care. Each of the 12 NPI-Q domains contains a survey question that reflects cardinal symptoms of that domain. The NPI-Q provides symptom Severity and Distress ratings for each symptom reported, and total Severity and Distress scores reflecting the sum of individual domain scores. Most informants will be able to complete the NPI-Q in 5 minutes or less.
Cognitive Screening Tools
- Cognitive Assessment Toolkit – Tools for Early Identification of Mild Cognitive Impairment
- National Institute on Aging (NIA). Cognitive Assessment Tests
- AD8 Dementia Screening Interview
- NIH Toolbox (including >80 stand-alone measures)
- Mini-Cog
- Quick Dementia Rating System (QDRS)
- Tablet-based Cognitive Assessment Tool (TabCAT)
- Assessing Cognitive Impairment in Older Patients from NIA
- Cognitive Assessment and Care Plan Services from the Centers for Medicare & Medicaid Services
- Cognitive Assessment Considerations: Understanding the Evidence from NIA
- 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers. Two videos, rich with data and suggestions from national groups and experts, on the challenges, resources and possible interventions for providing optimal care to people living with dementia and their (family) care partners.
- Agency for Healthcare Research and Quality (AHRQ): Developing a Shared Care Plan. A shared care plan is a means to facilitate communication between patients, their care partners and providers to develop a team approach to care.
- The Ultimate Alzheimer’s Resource Guide for Caregivers. A website filled with practical information and resources directed at care partners of patients with Alzheimer’s disease.
- Resources for Caregivers of People With Alzheimer’s Disease and Related Dementias. A list of resources from the Alzheimer’s Association geared specifically for care partners of patients with AD.
- The AFA Teal Room. The Alzheimer’s Foundation of America (AFA) developed a website of virtual therapeutic activities that care partners can enjoy with their loved one who has Alzheimer’s disease; all activities can be performed within the safety of their home. The website also has additional resources for AD care partners.
- CDC Healthy Brain Project. Find additional resources for care partners – including developing a care plan, taking care of yourself, and care giving resources at
- Health Services and Resource Administration (HRSA). A series of ~7 PowerPoint modules to aid care partners in providing assistance to persons with Alzheimer’s disease, including how to take care of themselves and deal with the challenges of caregiving.
- Alzheimer’s Association. alz.org and https://www.alz.org/professionals/professional-providers
- Alzheimer’s Association: Billing codes for Alzheimer’s and Related Dementia
- Alzheimer’s Disease Education and Referral Center. ADEAR Center is an official U.S. government website that provides information on Alzheimer’s disease and related dementias care, research, and support.
- Alzheimer’s Disease Program – Training for Health Professionals. Additional training programs, educational materials on brain health for professionals. Available at:
- Health Services and Resource Administration (HRSA). HRSA Health Workforce. Train healthcare workers about dementia. Series 1: An An overview of dementia and health care provider roles (16 modules). Available at: https://bhw.hrsa.gov/alzheimers-dementia-training
- National Institute on Aging (NIA), National Institutes of Health (NIH): Alzheimer’s and Related Dementias Resources for Professionals. Includes tools and guidelines for diagnosis and management includes a wide range of tools on assessment, diagnosis and management of AD, assistance for care partners, developing care plans, a guide to billing codes, among others. Also includes an additional segment on professional training and curricula.
- National Institute on Aging (NIA), National Institutes of Health (NIH): Alzheimer’s disease publications
- National Institute on Aging (NIA), National Institutes of Health (NIH): Alzheimer’s and dementia
- Administration for Community Living (ACL): National Alzheimer’s and dementia resource center
- Centers for Disease Control and Prevention (CDC): Healthy brain resource center
Clinical trials. Information about current/ongoing trials and enrolling trials.
From NIA:
- Alzheimers.gov Clinical Trials Finder
Search for clinical trials and studies on Alzheimer’s and related dementias, cognitive impairment, brain health, and caregiving. - Dementia Research and Clinical Trials
Get information and resources for helping people find and understand clinical trials. - Alzheimer’s and Dementia Outreach, Recruitment, and Engagement (ADORE) Resources
ADORE is a searchable collection of materials designed to support recruitment and retention into clinical trials and studies for Alzheimer’s and related dementias. It includes examples of Clinician Partnerships with Alzheimer’s Disease Research Centers and other materials. - Talking With Your Patients About Alzheimer’s and Related Dementias Clinical Trials
Find guidance, in English and Spanish, for discussing Alzheimer’s and related dementias clinical research studies with your patients. Also, access resources to help them learn more about participation.
References
- www.alz.org/alzheimers-dementia/facts-figures
- Phan SV, Osae S, Morgan JC, Inyang M, Fagan SC. Neuropsychiatric Symptoms in Dementia: Considerations for Pharmacotherapy in the USA. Drugs R D. 2019;19(2):93–115.
Created with support from Otsuka and Lundbeck. Copyright 2024 AAPA, All Rights Reserved.