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When faced with the diagnosis of Alzheimer’s disease, patients and families oftentimes don’t know where to turn. There are so many psychological, physical and behavioral implications to learn about and continually adjust to, confusion, frustration and hopelessness often become overwhelming. Having a road map through the vast health care maze can help.
“In today’s complex healthcare landscape, the challenges of keeping up with doctor’s appointments, laboratory tests, and medication schedules, as well as all with the unique issues of caring for a person with Alzheimer’s disease often seem insurmountable,” Teresa Treiger, president of Case Management Society of America explains. Finding the right team of professionals to optimize care can help, and is essential in the well-being of both the person diagnosed and their family members. Here’s where to begin:
Primary care physicians can detect dementia based on the general signs and symptoms, but a neurologist or Alzheimer’s specialist is better equipped to provide focused and thorough care of patients with dementia. Neurologists specialize in the brain and nervous system, and many neurologists concentrating on dementia become Alzheimer’s specialists.
A psychologist can help those diagnosed with Alzheimer’s disease and other dementias cope with emotional problems. According to the Alzheimer’s Association, psychologists offer individual, family and group therapy sessions, as well as coaching successful emotional interaction between the diagnosed individual and their loved ones. A geriatric psychiatrist can help treat depression and certain symptoms of dementia specifically in the person diagnosed.
A geriatric care manager or case manager is an essential part of the Alzheimer’s team. According to the Alzheimer’s Association, this person will provide assistance for you and your loved one in finding resources, making decisions and managing the stress that comes from diagnosis and everyday living. They can also assist in making a care plan for your loved one, with the collaboration of other healthcare team members. They may be a social worker, nurse, counselor or gerontologist, a person specializing in social, psychological and biological aspects of aging. “Case managers are adept at working with complexly ill people and their families — because of both clinical knowledge and healthcare business experience. We have a unique global perspective as to what is going on with the person, as well as how to relate to other clinical professionals and health insurance plans to ensure the patient receives the right care at the right time, and in the right setting,” Treiger adds.
An occupational therapist can help the person diagnosed with dementia change activities or environments so they can engage in daily activities, such as eating, dressing and bathing, notes the Alzheimer’s Association. They can also help family members adapt caregiving for safety and efficiency.
Home care specialists provide personal and companion care in the home. Their assistance supplements the gaps in self care ability experienced by an individual diagnosed with dementia, as well as supports family caregiving. Home care helps those living with dementia with grooming, bathing, dressing, cooking, cleaning, running errands, making medical appointments, and much more.
As you can see, the group of professionals that someone diagnosed with dementia works with on a regular basis is complex. It’s important that the patient and caregiver network decide on one main point-of-contact soon after diagnosis, as this ensures communication from the professionals to the diagnosed individual and other family members is streamlined and efficient. This person can be the patient’s health care proxy, a person appointed by the patient to make healthcare decisions in the event s/he is no longer able to. “The care of an Alzheimer’s patient is quite intricate. A specified point-of-contact helps simplify communication,” Treiger notes. “This is extremely important to the care team, because it helps decrease the chance of mixed messaging or misguided perceptions in what has been communicated, and thereby can improve the quality of healthcare.”
For optimal communication and care taking, the chosen point of contact must be proactive in exploring the best options for the patient with members of the care team. According to the Agency for Healthcare Research and Quality, discussing the diagnosis, progression, treatment choices, and goals of Alzheimer's disease care among the patient (especially in the early stages), the selected family member and the entire care team is essential. Keeping the care plan consistent with individual values, preferences, culture, educational level and abilities makes certain that everyone involved feels honored, respected, and is clear about the journey ahead.
Some care resources may not be covered by insurance, so a thorough understanding of financial impact of needed care is important. This is a conversation that family members should have regardless of when a loved one is diagnosed, but it is often overlooked and left to happen during a crisis situation. However it happens, there needs to be a clear agreement within the family of what financial resources are available. Understanding the patient’s insurance benefits is important, so the primary caregiver should familiarize themselves with the information.
A health insurance case manager can help assess, plan and advocate the best benefits for a patient on an individual basis. If available, request one immediately, and maintain regular communication throughout the caregiving process. This will ensure that you’re providing the appropriate information to the insurance company, so they can review and approve necessary services and care promptly. If an insurance company doesn’t offer case management support, the patient or family caregiver should consider hiring an independent case manager in order to ensure the patient has an advocate, although this is usually an out-of-pocket expense.
Long term care insurance may also be a possible source of home care coverage. For more information, please visit the
Because the patient has freedom of choice for care, understanding the available community resources is essential. Physicians, nurses and social workers are always great references for care resources. Employers, elder services, churches, veteran groups and social service departments should also be evaluated for optimal options. Two great places to start: