Navigating the Health Care System

When seeking care for cognitive decline and dementia, there are several doctors you may see or be referred to.
Your primary care physician (PCP) will probably be your first line of contact for dementia care. A PCP can discuss symptoms of cognitive decline with you while taking into consideration your health history and other present health conditions. Primary care physicians also often perform preliminary cognitive screenings. Your primary care physician may refer you for more testing or to a specialist depending on the results of these screenings. Geriatricians are primary care physicians who specialize in older adult health.

Neurologists are a specific type of doctor who specialize in brain functioning, processes and disease, including dementia and Alzheimer’s disease. You may be referred to a neurologist for more specific testing including neuropsychological testing, spinal tap, or blood test. An amyloid PET scan can detect the hallmarks of Alzheimer’s disease in the brain, amyloid plaques and tau tangles. Neurologists can also conduct scans for Lewy bodies and other physical signs of related dementia.  There are also many subspecialties that may have a more specific focus on Alzheimer's and dementia.

Talk to your primary care physician about specialists or facilities in your areas that may be right for you! 

Most persons living with Alzheimer's Disease or related dementias are over age 65 and have Medicare. Medicare can be difficult to navigate, and services vary by Medicare type. 

• Medicare Part A covers¹

o   Inpatient care in a hospital

o   Skilled nursing facility care

o   Inpatient care in a skilled nursing facility (not custodial or long-term care)

o   Hospice care

o   Home health care

• Medicare Part B covers medically necessary services or preventative services such as: ²

o   Clinical research

o   Ambulance services

o   Durable medical equipment

o   Mental health 

• Inpatient, outpatient, partial hospitalization

o   Limited outpatient prescription drugs

• Medicare Part D is prescription drug coverage. 

There are also Medicare Advantage Plans, often referred to as Medicare Part C. Medicare Advantage Plans include additional coverage, including coverage that may not be typically covered as part of traditional Medicare.

Alzheimer’s Tennessee has a Caregiver Academy video on “Medicare_Resources_for_Elder_Care.” 

Medicare Care Planning 

As of 2017, Medicare covers care planning for individuals with cognitive impairment, including Alzheimer's disease and related dementia. In the first year the care planning reimbursement was available, fewer than 1% of seniors living with Alzheimer’s received the care planning benefit.³

A care planning visit includes a functional assessment, an evaluation of safety, identification of caregiver needs, advance care planning, medication reconciliation, and the development of a detailed care plan, including referrals to community resources.³

Make sure you talk to your physician about care planning services!

State Health Insurance Assistance Program 

The Tennessee Commission on Aging and Disability manages the State Health Insurance Assistance Program (SHIP) for Medicare participants.  SHIP is a national program that provides free and objective one-on-one counseling, information and help to people with Medicare, people who may need Medicare, and people looking into Medicare with someone else in mind. For more information on SHIP please visit the SHIP webpage or call toll free at 1-877-801-0044. 

You may be eligible for Medicaid services including Long Term Services and Supports (LTSS) through Tennessee’s State Medicaid Program, TennCare.⁴ Long Term Services and Supports are medical and/or personal care and supportive services needed by individuals who have lost some capacity to perform activities of daily living, such as bathing, dressing, eating, transfers, and toileting, and/or activities that are essential to daily living, such as housework, preparing meals, taking medications, shopping, and managing money.⁴ Click here to apply for TennCare and see what services you may be eligible for.

There will come a point in everyone's lives when they are no longer able to care for themselves. As dementia progresses, it will become increasingly difficult for informal caregivers to provide the care necessary. Having a long-term care plan in place early will prevent stress on the caregiver further down the road. There are several types of care to consider:

Palliative care is provided by a specialized medical team for individuals with a long-term illnesses, including dementia.⁵Palliative care acts as an extra layer of support and works with your current health care providers to provide the best care possible. Often palliative care is conducted in the home and can limit emergency room visits.⁵ To learn more about Palliative care, visit the Centers for Palliative Care website or talk to your doctor if it may be right for you. 

Home health care includes skilled nurses or health aides coming to you home to assist in formal care. Home health services can be included as part of Medicare, Medicaid, or your private insurance program. This type of care exists to keep an individual in the home as long as possible while alleviating the physical burden of care from the informal caregiver. 

If in-home care isn’t possible, you may consider long-term care facilities such as nursing homes or assisted living facilities. Some long-term care facilities are specific for individuals with dementia or may include a memory unit or wing. These dementia-specific care units can greatly increase quality of life for individuals with dementia. When considering long-term care facilities, look into what dementia specific services they may offer. 

Hospice care, often referred to as end-of-life care, is for individuals in the last six months of life. Hospice care may be considered for individuals in late-stage dementia. 

Living with dementia will require good communication between the person living with dementia, caregivers, and health care providers. Your health care provider is there to assist you but going into each appointment with a plan can help you get the most out of your visit.

• Write down your questions before the appointment. It’s okay to ask about other treatment options and express concerns.
• Track changes in behavioral and psychological symptoms and let your doctor know your concerns.
• Take notes during the appointment to identify progress being made and remind you where you left off for the next appointment.
• Always bring ALL medications. Often persons living with dementia are also managing other chronic health conditions and some medications may not be suitable to take together.
• Make sure you leave the doctor’s office with a care plan, resources, and answers to your questions.
• Talk to your doctor about a Do Not Resuscitate (DNR) order and Advance Directives
• Always call you doctor with any additional questions or if there are immediate changes in condition.

The Senior Medicare Patrol (SMP) has free Personalized Health Care Journals that individuals with dementia or their caregivers can take to all their doctor’s appointments.  The journal tracks doctor’s appointments, family history, allergies, medications, emergency contacts, and doctor and provider contact information. The journal also allows individuals to record doctor’s appointments, questions for the doctor and answers, and care plan or special instructions from the doctor.  The journal is small enough to carry in a backpack or a purse, making it easy to carry to appointments. For more information on how to get a free journal, reach out to your local AAAD office or call 1-866-836-6678.