Create a Process to Refer People With Dementia

Primary care providers should use a standardized process for referring patients and their caregivers to other providers and resources. If referring to external providers, the primary care team should verify that the external providers or organizations are knowledgeable about and qualified to assist with dementia-related needs (including nonmedical needs such as recreational, financial, and legal matters). 

The GSA Referral Form can be customized to individual health care organizations and their local resources; this sample referral form lists a variety of issues that can merit a referral and the types of professionals who would address these concerns. The form also encourages documentation of the patient or health care proxy’s authorization before making a referral. Issues that are addressed include:

  •  Education of the person living with dementia and caregivers.
  •  Legal and financial planning.
  •  Clinical trials information.
  • Quality of life improvement.  
  • Mental health and therapy.  
  • Neuropsychiatric symptoms (e.g., agitation, depression, hallucinations).  
  • Addressing comorbidities and other clinical needs (e.g., if the person with dementia shows signs of sensory or motor loss, the case manager may ask the care team to conduct additional evaluations that could lead to a referral for rehabilitation services).  

Of note, all the professionals involved in the internal referral should be aware of the special needs of individuals with dementia (Mittelman & Epstein, 2003). 

“A needs assessment should address a broad rage of medical and psychosocial needs”

A member of the primary care team should ensure referral of individuals with dementia and their families to qualified professionals who can assist with identifying and addressing broader medical and psychosocial needs. For example, the evaluation should consider whether individuals with dementia and their caregivers can access healthy food, safe and reliable transportation, caregiver training, and respite services. A variety of care team members, including case managers, care managers, social workers, patient navigators, or others trained to assist primary care patients at high risk, can engage in needs assessments.


The needs assessment should also consider the ability of the person living with dementia to access potential resources. Some resources and supports are associated with out-of-pocket costs. For example, long-term care facilities are not covered by Medicare and are often associated with high fees. In other cases, there may be lengthy waiting lists to obtain services. When providing referrals, primary care teams should take care to set realistic expectations.

Providers may wish to customize the GSA Referral Form for the local areas served by their practice or organization. Ideally, a member of the care team would include the contact information for an expert who can assist with a specific issue and then serve as a gateway for the patient’s next referral because individuals with dementia often have several competing needs for prioritization. To avoid overwhelming people with dementia and their families with too much information, it is best to focus the materials offered to key resources and to prioritize the most helpful next steps. Another important aspect to ease the referral process is to ensure that all contact information shared is current.


A number of other resources and services may also be helpful to people with dementia and their families. The GSA Referral Form includes information about general community-based organizations, dementia-specific organizations, and opportunities to participate in research studies.


While services (and associated costs) will differ across communities and regions, certain Alzheimer’s disease support organizations, including Alzheimer’s Association chapters, tend to have similar programs. Of note, Alzheimer’s Association chapters and some other Alzheimer’s disease support organizations help individuals living with other dementias (e.g., Lewy body dementias, frontotemporal dementia) access appropriate services.


Additionally, providers may refer people to opportunities to participate in research studies. More information on these opportunities is provided in the Communicating About Clinical Trials section of this toolkit.


Providers may customize the GSA Referral Form by identifying local branches of the above-listed external resources as well as any other local resources that they would like to share. These resources may include specific community wellness centers, personal care agencies, and private organizations that offer day programs and care management services for the benefit of people with dementia and their caregivers. In some cases, these resources may be specific to a provider’s region. For example, New York University Langone Health offers free recreational programs to residents of New York City and Alzheimer’s Los Angeles offers a program called ALZ Direct Connect that identifies appropriate referrals for individuals with dementia in that region. In other cases, programs may be offered through third-party payers. For example, Medicare beneficiaries enrolled in a Medicare Advantage Plan are eligible for a program called Silver Sneakers that offers physical fitness classes for older adults with all levels of ability.

There are a number of online resources available to support people with dementia and their families, including:

  • Quick Tips from the Ohio Council for Cognitive Health provides information (with tip sheets in multiple languages) about dementia and its management, including brain health, communication strategies, behavioral management, self-care, hiring home care help, and keeping the person with dementia safe.
  • Caregiver tip sheets from Alzheimer’s Los Angeles provide information (in multiple languages) for managing behaviors associated with dementia.

GSA Momentum Discussion Podcast episode, Risk-Based Strategies for Referrals to Community Services for Older Adults With Dementia and Their Care Partners, offers primary care teams valuable insights into referring patients with dementia to community supports.


Refer | Approaches to Implement

Overview | The Referral Process | Conduct Regular Follow-up | Culturally Competent Conversations
Communicating about Clinical Trials | Refer References