Alzheimer's and dementia care: Diagnosis, management and caregiver support

This handbook from the National Institute on Aging offers techniques and approaches to help clinicians with diagnosis, promote treatment adherence, and improve patient and provider satisfaction. The handbook is available to print or order online. Recommended section: Talking with Patients with Cognitive Problems.

This 2022 article from the CDC reviews risk factors for cognitive decline in adults age 45 and older, and describes goals to reduce the risks of Alzheimer’s disease and related dementias.

This article reviews evidence and guidance for Alzheimer’s disease prevention. Suggestions include targeting 19 factors:

• Level A (strong evidence): education, cognitive activity, high body mass index in late life, hyperhomocysteinaemia, depression, stress, diabetes, head trauma, hypertension in midlife and orthostatic hypotension.
• Level B (weaker evidence): obesity in midlife, weight loss in late life, physical exercise, smoking, sleep, cerebrovascular disease, frailty, atrial fibrillation, and vitamin C.

The National Institute on Aging developed this resource on preventing Alzheimer’s disease that can be downloaded for the patient, family and other caregivers. The booklet provides the background on risk factors for Alzheimer’s disease, offers preventive strategies and ways to navigate treatments.

Proper treatment and the physician-patient relationship are equally important to health care. Patients often don't know what questions they should ask, or how to make sure they're getting all the information they need during their visits. This booklet from the National Institute on Aging empowers patients to take an active role in their care.

The National Institute on Aging provides this resource for patients, families and caregivers to help with safe use of medicines. It provides tips to help older adults plan at home for the safe use of medicines, including keeping a list of all medicines, discussing medicines with the pharmacist and asking the right questions of your doctor.

This infographic from the National Institute on Aging can help patients learn more about health lifestyle changes to prevent dementia.

This resource from the National Institute on Aging is a guide for physicians to help assess and screen for cognitive impairment in your patients.

The American Psychological Association provides this continuing education article. Learning objectives focus on mild cognitive impairment and criteria for diagnosis, as well as prevention and treatment.

This resource from the Alzheimer’s Association includes clinical recommendations on evaluating patients for risk factors, assessing and treating symptoms, and monitoring patients' cognitive status over time.

The annual wellness visit (AWV) is a Medicare benefit that focuses on long-term preventive care. Detection of cognitive impairment is a component of the AWV. This resource provides information on the AWV benefit, eligibility, required components, and coding and billing specifics.

This brief family questionnaire can be used during clinic visits, like the annual wellness visit, to help identify memory problems that might otherwise go unnoticed. It consists of five questions, and a family member or friend can complete it in less than a minute. It was designed by the National Chronic Care Consortium and the Alzheimer’s Association.

The National Institute on Aging developed this patient and family resource that addresses a common symptom of aging: forgetfulness. This guide addresses the causes of memory loss, offers tips for keeping the memory sharp and discusses actions that can be taken to follow up on concerns.

This worksheet for patients and families from the Alzheimer’s Association can help people know when and what to bring up with their health care team.

This resource from the National Institute on Aging details tools that are designed for detecting early cognitive changes as well as guidelines for diagnosis and management. Professional training and curricula covering Alzheimer’s and related Dementias are provided, as well as details on clinical trials and studies.

This three-minute assessment is made up of two components: a three-item recall test for memory and a clock drawing test. Mini-Cog is free and is available in many languages. Training to administer this tool takes about 10 minutes.

Learn more about the test, including how to incorporate it into a regular wellness exam or primary care visit.

This validated short cognitive screening instrument is designed to reduce the impact of language and cultural differences on the results of screened individuals. This paper tool is helpful for clinics that serve linguistically diverse populations that have varying education levels

The Montreal Cognitive Assessment is easy to administer and score, and results can be interpreted quickly by health providers. MoCA measures things like short-term memory, visuospatial abilities, executive function, attention and concentration, language abilities and orientation to time and place.

Several versions of MoCA are available, in an app or on paper.

Find out more on how to access and administer the test, plus training and certification for physicians and clinical staff.

This test consists of eight yes/no questions about changes in a patient’s thinking, memory and behavior. In combination with the Mini-Cog, the AD8 is effective for detecting early cognitive change. No formal training is needed to administer the test. Washington University has granted its use for clinical care purposes.

Access the test here, along with guidelines on administering, scoring and interpreting the results.

This tool can be useful for patients who have mild-to-moderate symptoms of dementia. Score one point when the patient answer matches the test answer. A score of greater than five indicates further evaluation.

The PHQ-9 can be useful in clinical practice to assess depression severity and its symptoms.

This is a valid screening tool for gauging severity of generalized anxiety symptoms. Both anxiety and depression may affect cognitive assessment scores.

This questionnaire calculates the extent of the patient’s ability to engage in instrumental activities of daily living. The questionnaire is useful to assess and monitor functional changes over time. It is answered by the patient, family, or caregiver to indicate the presence of cognitive impairment.

These videos from the Alzheimer's Association, a physician, a patient with Alzheimer’s and his spouse discuss the diagnosis and path forward.

This resource from ACT on Alzheimer’s® will empower patients and their caregivers to be active participants in managing symptoms.

I Have Alzheimer’s Disease is an Alzheimer’s Association resource with multiple sections, including helping friends and family live well with the disease. It provides information to assist family and friends on what to expect from the patient and how to maintain a high quality of life.

Live Well Online Resources is a guide from the Alzheimer’s Association for persons living with mild cognitive impairment and early dementia. The resource provides information on moving and staying healthy, as well as shaping a positive attitude and reducing stress.

Created by ACT on Alzheimer’s to summarize the steps taken during the management of Alzheimer’s disease, this guide provides a workflow, a checklist and a summary of other important definitions and information to reference when caring for patients.

Adapted from ACT on Alzheimer’s, this is a comprehensive listing of resources for mid- to late-stage case management for the dementia patient.

Medicare covers a separate visit to thoroughly assess a patient’s cognitive function and develop a care plan. The CPT code is 99483. This video from CMS describes Medicare coverage for cognitive assessment and care plan services.

The AAFP and the American College of Physicians published this set of pharmacological practice guidelines for patients who have dementia.

Lecanemab, a medication approved by the FDA for use in the treatment of dementia, has been shown to slow cognitive decline in persons with early Alzheimer’s disease. The New England Journal of Medicine published this study in 2023.

The Alzheimer’s Association developed this guide for patients to help build a care team that will provide help and support through each stage of the disease.

Provided by the National Institute on Aging, and available in both English and Spanish, this fact sheet includes information on several prescription drugs currently approved by the FDA to treat people who have been diagnosed with Alzheimer’s disease.

The Palliative Care Network of Wisconsin has numerous “fast fact” sheets for the management of late-stage dementia. These include anticipatory guidance in dementia across the stages, decision making for patients with advanced dementia and a hip fracture, and a review of dementia medications in palliative care.

Many antipsychotic medications aren't approved for the treatment of patients with dementia-related psychosis. Nonpharmacological methods are preferred for the management of behavioral and psychological symptoms in patients living with dementia. This UK National Health System guidance reviews uses, risks and alternatives to antipsychotic medication and risk reduction in antipsychotic medication prescribing.

The ePrognosis site has prognostic calculators for people with dementia, especially those who have been hospitalized or live in nursing homes.

The Alzheimer’s Association provides this overview of information related to hospice care, including a community resource finder.

This brief primer from the Alzheimer’s Association outlines steps that are needed to prepare for autopsy and managing the process for a patient who has Alzheimer’s disease.

Adapted from ACT on Alzheimer’s, this is a comprehensive listing of resources for mid- to late-stage case management for the dementia patient.

There are local agencies throughout the country devoted to aging and designed to support care for older adults in their homes. This website provides a searchable database of agencies which are familiar with resources in their areas.

Driving is an important topic in cognitive impairment. This resource outlines the legal responsibilities of physicians in reporting impaired drivers.

The U.S. Department of Health and Human Services Administration on Aging provides a resource for elder rights protection, as well as programs and services related to elder justice.

The National Center on Elder Abuse has information for clinicians about the forms of elder abuse, warning signs of elder abuse, and links for resources.

Developed by the Hartford Center for Mature Market Excellence, this guide is designed for people who have dementia and their families to with independence and safe driving. It provides suggestions for monitoring, limiting, and stopping driving, and provides cases featuring experiences of family caregivers and people who have dementia. It can be downloaded or ordered here.

The Alzheimer’s Association provides a contract between the patient and caregivers that acknowledge there will be a point in time that the patient should no longer drive a motor vehicle.

Designed for use by the patient, this questionnaire is part of an educational service of the American Academy of Neurology. It is based on an assessment of current scientific and clinical information to help in developing the diagnosis of dementia and a course of action in care. This tool best applies to patients who have mild dementia.

The National Institute on Aging resource provides background and guidance on elder abuse, and actions to prevent or report abuse. It also lists resources about the long-term effects of abuse and caregiver stress.

The Center for Practical Bioethics provides information, planning resources, audio interviews, case studies and articles about advance-care planning.

Five Wishes is a resource for creating advance-care directives with your patients in the event of a serious illness or disease. It can be used in all 50 states, with eight states requiring completion of additional forms. It is available in 28 languages. There is a small fee associated with each download.

The National POLST Consortium provides national resources related to the POLST: Portable Medical Orders. POLST communicates medical orders for seriously ill or frail people. The site includes a directory of state POLST Programs.

The Conversation Project and the Institute for Healthcare Improvement have resources for patients, families and caregivers to discuss matters of end-of-life care. The Conversation Starter Kit, including in the context of dementia, can be downloaded from the site.

Featuring specific support for surrogate decision makers, PREPARE For Your Care is an evidence-based, online and video-based, step-by-step program to help with medical planning.

The Alzheimer’s Association offers information and resources on end-of-life planning. It provides an outline of conversation points for physicians, patients, families and other caregivers to discuss sensitive topics related to end-of-life issues.

This resource helps individuals consider various care choices and voice them to family and caregivers.

Some patients may be interested in a dementia-specific advance directive. This directive serves to communicate your wishes if you develop dementia and can help family and caregivers with difficult medical decisions.

This resource from the National Institute on Aging provides information for patients on a variety of aspects of long-term care. Health, financial, legal, housing, and other options are described.

The Alzheimer’s Association offers information and resources on creating a plan for legal issues for patients and families. The information covers the basics of legal planning, documentation needed and when to get help from an attorney.

The Alzheimer’s Association offers information and resources on financial planning after a diagnosis of Alzheimer’s disease or other dementia. It can aid patients and families in discussions about the cost of care and other professional assistance when dealing with planning for long-term illness and end-of-life care.

The Alzheimer’s Association offers information regarding different types of long-term care and determining best fits for persons living with dementia. See also the Caregiving section.

Alzheimer’s Caregiving from the National Institute on Aging is designed for family members and caregivers of people who have Alzheimer’s disease. It provides helpful information about the disease, making the patient’s home safe, managing daily activities and planning for the future.

The Department of Health and Human Services provides information on issues such as supporting the caregiver, support from a distance, elder care assistance, alternatives to nursing homes and government health resources.

Developed by a board-certified geropsychologist, Dementia Careblazers includes online resources, the Dementia Caregiver Survival Guide, a blog and videos (available on YouTube) related to real-life support for caregivers.

Access comprehensive caregiving resources and support covering topics on care at home, nursing homes, medical, financial and legal issues, life balance and local resources.

AARP created state caregiver resource guides to help family caregivers access key programs, services and agencies in their communities. The guides include tools and support for everything from health, legal and financial assistance to respite care.

Understand key caregiving terms and definitions for the most confusing acronyms and words.

1-877-333-5885 (English)
1-888-971-2013 (Spanish)

Adapted from ACT on Alzheimer’s, these clinical provider practice tools include a comprehensive listing of resources for diagnostic assessment, case management and disclosure with a patient who has dementia. There are dementia-specific tools and resources for providers, including practical one-page tip sheets for practice implementation, and tutorial videos for cognitive assessments and delivering the diagnosis.

Provided by the Alzheimer’s Association of greater Los Angeles, this toolkit provides primary care professionals with resources to support dementia care management, including assessment instruments for family and caregivers to meet patient needs. The website is available in English, Chinese and Japanese.

Developed by the Gerontological Society of America, the KAER toolkit (Kickstart, Assess, Evaluate, Refer) is a 4-step process to detecting cognitive impairment and earlier diagnosis of dementia. This is a comprehensive and evidence-based guide with many resources.

For clinicians or clinics interested in training their health care teams about dementia, the U.S. Health Resources & Services Administration (HRSA) created PowerPoint training modules. There are more than 25 modules related to helping caregivers, how providers address caregiver needs, and an overview of dementia and health care provider roles