Care Management through the Disease Stages
Living successfully with a diagnosis of dementia can be achieved, AND it requires planning for the different stages of disease progression. Planning involves conversations, accessing resources and supports, and receiving ongoing medical attention.
Family members and individuals with dementia often do not have the conversation about goals of care, so it is important for the provider to encourage these discussions.
Alzheimer’s disease is a chronic, progressive, ultimately terminal illness.
The time course is generally around 6 – 10 years from diagnosis to death, but can vary from 3 – 20 years.
- Common causes of death directly related to Alzheimer’s disease are aspiration pneumonia and hypovolemic shock related to cessation of eating and drinking.
- Alzheimer’s patients may also develop and die from other infections, including UTIs, community- or facility-acquired pneumonias, and infected pressure ulcers.
- They may also suffer strokes, myocardial infarction, arrhythmias, pulmonary emboli, and other common geriatric conditions.
- Patients may die of other causes or comorbid illnesses during the progression of their dementia.
Throughout the course of the disease, it is important for clinicians to show empathy and communicate with caregivers that the provider understands the gravity of the road they are traveling.
- This will take time to listen.
- If possible, allow for longer patient visits and schedule regular check-in appointments.
- It will be an opportunity to also assess caregiver stress and depression, and recommend separate appointments for caregivers as appropriate.
- See Guidelines section on Caring for the Caregiver for more information.
During various points along the disease continuum, the clinician will need to address a variety of topics with the individual and family members.
The most critical topics to cover as soon as possible include:
- Medication options
- Primary and proven treatment options; disclose those that are evidence based and sufficiently studied, and explain these as standards of practice.
- Less well established; explain the warnings regarding research or lack thereof, the fact that these medications are chemicals whether natural or man-made.
- Driving – physician assessment of the patient’s capacity to continue to drive, and when that should be re-evaluated. Physicians have a legal obligation to report patients with diminished capacity. If uncomfortable making this disclosure, this would be an appropriate referral to a specialist.
- Finances and Legal Issues.
Links to Instruments and Resources
Resources For Caregivers
Other important topics to cover during the first year include
- Community resources for both the individual and caregivers
- Social resources
- Housing: home modifications, long-term care options
- Treatment of cognitive and behavioral symptoms
- Management of vascular risk factor
- Lifestyle factors such as diet, exercise, sleep, alcohol, etc.
- Discussion of caregiving and of resources
- Genetic questions (more appropriate for younger onset of dementia)
- Research options, including clinical trials
Managing Behavioral Issues
Although cognitive impairment is the clinical hallmark of dementia, behavioral and psychological signs and symptoms of dementia (BPSD), which are also known as non-cognitive neuropsychiatric symptoms (NPS), are extremely common and are responsible for the majority of pain and suffering experienced by the individuals living with dementia and those who love and care for them. In addition, BPSD is a primary factor responsible for the medical and other costs associated with caring for individuals living with dementia. BPSD accounts for at least 30% percent of the cost of caring for community dwelling individuals with dementia.
Research has found that BPSD is associated with:
- Reduced quality of life for patients living with dementia,
- Reduced quality of life for family members and caregivers,
- Early nursing home placement,
- Hospital admissions,
- Avoidable morbidity and mortality,
- Caregiver stress and depression,
- Reduced caregiver employment income.
The assessment and treatment of BPSD is not simple. BPSD is the result of the interaction of numerous possible factors that are internal and external to the individual living with dementia, including the brain disease responsible for the dementia and the environment in which the individual is living.
A number of groups and organizations have developed and published excellent algorithms, treatment guidelines and other resources to help clinicians and family members accurately diagnose and treat BPSD. The goal of this section in the full Guidelines is to succinctly summarize previously developed information with references so that the treating provider can easily obtain additional and more detailed information when necessary, and so that the provider knows when to seek consultation from a specialist in this area. Specifically, this guide contains an assessment and treatment algorithm, a number of guidelines for assessing and treating some of the most common forms of BPSD, and a form for caregivers to use when preparing to meet with a clinician in order to obtain help with BPSD.
Once a diagnosis is made, both behavioral/environmental and pharmacologic interventions may be needed over the course of the disease. Tools below assist physicians to address the needs of patients and their caregivers.