To best prepare frontline workers for detecting, assisting and supporting Pennsylvanians with Alzheimer's disease and related disorders, the Department of Health will update the following resources on an annual basis to provide information in one place in accordance with Act 9.
The following resources below highlight the importance and value of early detection and diagnosis, awareness of knowing and analyzing signs and symptoms, best practices for delivering best care by ensuring cultural competency and addressing racial and ethnic disparities and inequities.
While clinical decisions, including specific screening tools, should be made by the treating physician based on an individual patient's clinical condition, the department also shares resources to assist those diagnosed with Alzheimer's disease or a related disorder with effective care planning, including treatment options, support and services, long-term care options, financial planning, advanced directives and care coordination at all stages of dementia including appropriate counseling and referral.
Early Signs and Symptoms of Dementia
- The American Academy of Neurology's Recommendations for Assessing Mild Cognitive Impairment.
- The National Institute on Aging (NIA) prepared a fact sheet to provide a quick snapshot of the four most common types of dementia and their signs and symptoms on the brain.
- The Alzheimer's Association has information on Who Should be Evaluated for Cognitive Impairment?
- Information for Clinical Identification and Management of Dementia can be found on the Alosa Health website.
- Pennsylvania Department of Aging's Pharmaceutical Assistance Contract for the Elderly (PACE) program partnered with Alosa Health to publish: "'Dealing with cognitive impairment" Prevention, management and advance care planning" to help educate medical professional who deliver primary care.
- For more information on Alzheimer's disease and dementia in multiple languages, please visit the Department of Health's Alzheimer's disease and related disorders website for the general public.
Early Detection and Timely Diagnosis
- In December 2019, the National Library of Medicine published a medical article in Dove Medical Press citing the benefits of patients receiving an early diagnosis for Alzheimer's disease.
- The United States Health Resources & Services Administration developed training materials to help educate health care workers on dementia that includes several modules on outpatient care, addressing caregiver needs and helping caregivers.
- Forgetfulness: Normal or Not? Infographic from the NIA provides a quick snapshot of the differences between mild forgetfulness and serious memory problems.
Person-centered Care Delivery
- In February 2017, the National Library of Medicine published a medical article in Dove Press citing the effectiveness of person-centered care on people with dementia.
- Published in the Gerontological Society of America in 2018, practitioners can find person-centered care history, core principles concerning dementia and current tools to measure outcomes discussed in Fundamentals of Person-Centered Care for Individuals with Dementia.
- Alzheimer's Association published Dementia Care Practice Recommendations outlining goals of quality dementia care in areas including, but not limited to, person-centered care.
Cultural Competency
- The U.S. Department of Health and Human Services Office of Minority Health designed a Guide to Providing Effective Communication and Language Assistive Services to help medical professionals effectively communicate to their patients and ensure cultural competency while delivering high quality care.
- The National Asian Pacific Center on Aging created an Action Guide for Service Providers to address barriers to dementia detection, treatment and support within Asian Americans and Pacific Islanders populations. This guide includes recommendations, resources and messaging for better reaching this community.
Racial and Ethnic Disparities and Inequities in Detecting, Diagnosing, and Accessing Treatment and Services
- The Centers for Disease Control and Prevention outlined barriers to Equity in Alzheimer's and Dementia Care. This information is also available in Spanish.
- In the 2021 Alzheimer's Association Report, the Journal of the Alzheimer's Association published disease facts and figures, which included discussion involving how care was affected by racial and ethnic diversities.
Validated Cognitive Assessment Tools
Tools to detect cognitive decline as part of the annual Medicare wellness visit or other annual physical exam
- The Alzheimer's Association fact sheet helps to explain what an Annual Wellness Visit is and what is included in that visit in the Medicare program.
- The Alzheimer's Association published recommendations for operationalizing the detection of cognitive impairment during the Medicare Annual Wellness Visit in a primary care setting.
- Tools for screening for suspected cognitive impairment and dementia can be found starting on page 17 in the Dealing with Cognitive Impairment publication provided by the Pennsylvania PACE program.
- The Alzheimer's Association provides guidance and tools for conducting a cognitive assessment during an office visit to determine whether a patient needs further evaluation.
- Further, the NIA shares additional resources for professionals including cognitive screening tests, tools for assessment, diagnosis and treatment and other information.
Sources of Clinical Practice Guidelines and Tools
- The Alzheimer's Association shares clinical guidelines for assisting patients with dementia.
- The American Psychological Association presents Guidelines for the Evaluation of Dementia and Age-Related Cognitive Change regarding ethical considerations, competence and evaluations of dementia.
- Mayo Clinic offers diagnosis and treatment recommendations for mild cognitive impairment.
- The National Library of Medicine published Clinical Practice Guidelines for Management of Dementia to provide broad framework for assessment, management and follow-up of older people with dementia.
Effective Treatment Options and Care Planning
Treatment options include care planning, support and services, long-term care options, financial planning, advanced directives and care coordination, at all stages of dementia, including appropriate counseling and referral.
- The Advance Care Planning and Memory Lossbrochure is currently used by Pennsylvania's PACE prescription drug program to help those diagnosed with Alzheimer's disease and related disorders and their loved ones with care planning.
- Penn Memory Center created a guide for planning care and frequently asked questions.
- The AARP has available resources for family caregiving in multiple languages sharing care planning best practices.
Supports and Services for Appropriate Counsel/Referral for Patients, Families and Caregivers
- National Institute on Aging Alzheimer's Disease and Related Dementias (ADEAR) Center or 1-800-438-4380. The ADEAR Center has Information Specialists available to assist with specific questions regarding Alzheimer's disease; free publications about Alzheimer's and related dementias symptoms, diagnosis, related disorders, risk factors, treatment, caregiving tips, home safety tips, and research; referrals to local supportive services and research centers that specialize in research and diagnosis. There are Spanish language resources, training materials, guidelines and news updates.
- Alzheimer's Association Greater Pennsylvania Chapter has a 24-Hour Helpline 1-800-272-3900. The Alzheimer's Association Greater Pennsylvania provides support, education, training and other resources to increase knowledge and to support those facing Alzheimer's disease and other dementias.
- The Alzheimer's Association 24/7 Helpline serves people with memory loss, caregivers, health care professionals and the public, providing reliable information and support to all those who need assistance. This resource is available toll-free anytime day or night at 800-272-3900.
- ALZ Connected a free online community for everyone affected by Alzheimer's or other dementia, and their caregivers, friends, family members and neighbors, as well as those who have lost someone to the disease.
- Across Pennsylvania, a local Area Agency on Aging can connect an individual to the appropriate programs and services needed. To find a local Area Agency on Aging, visit the Department of Aging's website.
- Dementia Friends Pennsylvania is an initiative dedicated to helping everyone in a community understand what dementia is and how it affects people. Through live, interactive online and in-person learning sessions, Dementia Friends Pennsylvania aims to increase understanding of dementia, and encourage community members to think about the small things they can do to make a difference for people living with dementia in the community.
- The American Academy of Neurology's Driving With Dementia: Understanding the Safety Risks
- Other resources and contact information include:
- Lewy Body Dementia Association – 800-539-9767
- The Association for Frontotemporal Degeneration – 1-866-507-7222
- American Stroke Association (Vascular Dementia) – 1-800-242-8721