For Health Care Providers

Only half of the people living with Alzheimer's dementia have been diagnosed and even fewer have the diagnosis recorded accurately in their medical records.¹ In order for an individual with dementia to maintain the best quality of life possible, it is imperative that proper diagnosis occurs and is recorded. 

Lack of proper diagnosis and recording can sometimes occur due to the perceived lack of treatment or supports after diagnosis with a "better not to know if we can't do anything to help" mindset.² Another barrier leading to issues with diagnosing is the inability for electronic health records to accurately reflect a dementia diagnosis, symptoms, or caregiver information.²

These issues surrounding dementia diagnosing not only affect care at the individual level but also can negatively impact care at the population level. Underdiagnoses and improper recording impacts estimates on the widespread effects of dementia and can subsequently effect the amount of funding and resources available for individuals with dementia, their caregivers, and researchers.¹ 

Delivering a dementia diagnosis can be difficult because there is no cure or step-by-step care plan to present to a patient. However, it is necessary to explain the progression of the dementia, ways to manage behavioral and psychological symptoms, and support services available to ensure those living with dementia and their caregivers can maintain quality of life.

Over 80% of individuals with dementia still live in the community and are cared for by informal caregivers, unpaid caregivers who are often loved ones of the individual with dementia.¹ As dementia progresses and care becomes more complicated, the physical, emotional, and financial demands on informal caregivers are likely to increase. Caregivers of persons living with dementia have increased risk for depression and development of chronic conditions such as coronary heart disease and impaired immune function.¹ A decrease in the health of a caregiver can ultimately lead to a decreased ability to provide adequate care for the individual living with dementia.¹ Caring for the caregiver is therefore not only important for the caregiver, but also the patient with dementia.

The Center to Advance Palliative Care (CAPC) recommends the following steps as ways to care for the caregiver:³

1. Include the caregiver as part of the team. Talk with the caregiver about their concerns, acknowledge their role in the care team, as well as their contributions.
2. Assess the caregiver's health. Caregivers of individuals with dementia have high physical and emotional burden. They are at increased risk of depression, coronary heart disease, impaired immune function and overall poorer health outcomes than non-caregivers.¹
3. Address caregiver's need. Make sure the caregiver is supported and is referred to relevant services. Caregiver assessments should be conducted as part of overall patient care planning. Ensuring that caregivers are aware of support groups, respite services, and are taking care of their own health is essential to good care of the individual with dementia. 

Care planning for individuals with cognitive impairment, including dementia, is covered by Medicare. Despite being a covered service since 2017, only 1% of eligible beneficiaries are receiving this service.⁴ Only 72% of primary care physicians are aware that the Medicare Annual Wellness visit includes a cognitive assessment and care planning services.¹

This care planning service can be coded as CPT code 99483 and can be billed for once every 180 days.⁵ Care planning should occur with individuals at least once per year and includes assessing the caregiver's needs.⁵

Part of overall patient management and care planning includes providing next steps and referral to supportive services. Services that may benefit your patient and caregiver after a dementia diagnosis include: 

• Other medical services such a geriatrician, neurologist or palliative care team
• Social workers and care managers
• Legal assistance
• Research opportunities including clinical trials
• Caregiver support services
• Respite services
• Adult day services
• Outside care planning services such as Alzheimer's Association

Please visit our local resources page to familiarize yourself with resources in your area. Also, please be aware that all pages on this website, including the list of resources, are printable so you can provide to your patients as needed.

You can also use other resource finders including the Alzheimer's Association's Community Resource Finder, Family Caregiver Alliance Navigator, and Area Agencies on Aging and Disability.

Individuals with intellectual and development disabilities are at increased risk of developing dementia. Specifically, individuals with Down Syndrome are at increased risk of developing Alzheimer's Disease.¹ Diagnosing dementia in individuals with intellectual or developmental disabilities is a challenge as symptoms present differently, may be harder to detect, and must also be treated differently.

Paying attention to physical changes can be key in diagnosing dementia in those with disability. For example, incontinence is more likely to occur in early stage dementia for individuals with disability than those without disability. Development of late onset seizure is a physical symptom affecting 50-80% of individuals with Down Syndrome who are diagnosed with Alzheimer's Disease.⁶

Another challenge is treating dementia in those with disabilities after diagnosis. The FDA has currently not approved use of cholinesterase inhibitors, a drug classed used for treatment of Alzheimer’s disease symptoms, in individuals with Down Syndrome.⁷ Because metabolic processes and medication response may be affected by other present health conditions including disability, medications or treatments used in some individuals with dementia may not be suitable for others.

As a health care provider, understanding differences in dementia for those with disability is key to timely diagnosis and quality care. There are resources available for clinicians working specifically with individuals with disability and dementia.

Alzheimer’s Tennessee – Direct Care Provider Training

Alzheimer’s Tennessee provides a free 8-hour classroom curriculum training for caregivers in assisted living, memory care communities and long-term facilitates. Training sessions are conducted by Certified Dementia Practitioners.  Contact Alzheimer’s Tennessee toll free number at (888)326-9888 for information on trainings.  For more information on Alzheimer’s Tennessee, please visit here.

Alzheimer’s Tennessee Management & Research Symposium

Alzheimer’s Tennessee provides an Annual Alzheimer’s Disease Management & Research Symposium. The symposium included topics relevant to early, middle and late stage Alzheimer’s disease, as well as differential diagnoses and the management of related dementias including, Frontotemporal Dementia and Lew Body Dementia.  Attendees can earn continuing education credits: 12.5 credits and AMA PRA Category 1 Credits for physicians. Additional CME credits are provided for Nurses, Psychologists, Social Workers, Long Term Care Administrators and Case Managers.  For more information on the Alzheimer’s Tennessee Management and Research Symposium, please visit here.

Dementia Care Toolkit

The Center to Advance Palliative Care (CAPC) has a toolkit  "Implementing Best Practices in Dementia Care."

This toolkit includes tools to assess needs of those with dementia and their caregivers, case studies, and infographics with key statistics.

In addition to the toolkit, CAPC also offers a 7-course  "Best Practices in Dementia Care and Caregiver Support" curriculum. Although most of the courses require a CAPC membership, the course "Supporting the Caregivers of People Living with Dementia" is available to non-members.

Alzheimer's Association Referral Pads

The Alzheimer's Association will provide referral pads for Alzheimer's resources for free, including shipping. These referral pads can be used by practicing health care professionals as an easy way to provide initial information after a dementia diagnosis. Please visit the Alzheimer's Association website to fill out an order form.

Alzheimer’s Tennessee Referral Pads for Clinicians

Alzheimer’s Tennessee provides free referral pads with a check list of community and Alzheimer’s related resources for families.  Contact Alzheimer’s Tennessee toll free number at 888 326-9888 for information on referral pads.  For more information on Alzheimer’s Tennessee, please visit here.

NIA - ADORE: National Institute on Aging - Alzheimer's and Dementia Outreach Recruitment and Engagement Resources

ADORE provides resources in 4 key areas in order to increase recruitment and retainment for dementia research:

1. Educate and raise awareness
2. Recruit and retain participants
3. Explain procedures and results
4. Manage Research Operations