By: Daniel R. Bateman, MD; Sophia Wang, MD; and Mary G. Austrom, PhD
America is getting older. The number of American’s age 65 and older is expected to grow from the current 55 million in 2019 to 88 million in 2050. And as our society ages, more attention is rightfully being paid to the importance of brain health. What is normal cognitive aging? What are the risks for Alzheimer’s disease? What things can a person do to improve their brain health? There are a number of myths and other incorrect information shared online and in other information sources. Together, as members of the National Institute on Aging funded, Indiana Alzheimer Disease Center, Outreach and Recruitment Core, we want to help dispel these 15 myths.
Normal Brain and Cognitive Aging
Myth 1: As people get older, their brain cells die more frequently.
Reality: In older adults without dementia or other brain disorders (such as stroke or Parkinson’s disease), the number of brain cells (“neurons”) remain fairly stable. However, the functioning of these brain cells may decline with age and can vary from person to person. Generally speaking brain atrophy “shrinkage of certain areas of the brain” is abnormal, and may represent evidence of a brain disease and increased brain cell death.
Myth 2: All older adults have memory problems.
Reality: Actually, some cognitive functions, such as wisdom and expertise, improve with aging. Occasional difficulty with remembering names, slower response time and subtle decline in organization and planning abilities “executive function”, can be normal. Memory problems and other cognitive problems more severe than this or those significant enough to cause difficulties in function are not normal. Alzheimer’s disease and other dementias are not a normal part of aging. They are diseases just like high blood pressure, diabetes, arthritis, or heart disease.
Alzheimer’s disease and Related Dementias
Myth 3: There is nothing I can do to improve my brain health or prevent me from getting Alzheimer’s disease. It is all genetic.
Reality: Genetics are only a small component of Alzheimer’s disease risk. Scientific studies have shown there are many actions you can take to keep your brain healthy and/or slow down cognitive decline:
Participate in cardiovascular exercise 4 to 5 times per week;
Stop smoking;
Control your blood pressure and diabetes;
Avoid or limit medications that can negatively affect brain function including opiates, anticholinergics (e.g. diphenhydramine), and benzodiazepines (i.e. alprazolam);
Talk to your doctor about non-pharmacologic approaches to pain and sleep management including physical therapy or psychotherapy;
Get adequate sleep nightly and when appropriate get assessed for sleep disorders, such as obstructive sleep apnea;
“Use it or lose it!” Take a class or learn a new skill to keep challenging your brain;
Stay socially active with others; and
Follow a Mediterranean and low salt diet.
To learn more about normal cognitive changes that occur with aging and what you can do about it, click on Action Plan for Individuals and Families at http://nationalacademies.org/HMD/Reports/2015/Cognitive-Aging.aspx.
Myth 4: Alzheimer’s disease is the same as dementia.
Reality: Dementia is an umbrella term for decline in cognitive abilities and function as a result of a brain disease. Alzheimer’s disease is the most common type of dementia. However, the latest research shows that many people have mixed dementia, i.e. more than one cause of dementia. Often this is a combination of cerebrovascular causes and Alzheimer’s disease. Other types of dementia include vascular dementia, dementia with lewy bodies, parkinson’s disease dementia, and frontotemporal dementia. People who are 90 and over may have a different type of dementia than those who develop dementia in their 60’s-80’s,
To learn more about Alzheimer’s disease and other dementias, check out the Alzheimer’s Association website www.alz.org/.
Myth 5: Only old people develop Alzheimer’s disease or dementia.
Reality: Dementia can affect people who are in their 40’s-50’s, and very rarely, even in their 30’s. If people start to have symptoms when they are younger than 65, this is considered early onset dementia. Early onset dementia affects about 200,000 people. While some of these people have a family history of early onset dementia, many do not. Early onset Alzheimer’s is the most common early onset dementia, followed by frontotemporal dementia.
To learn more, check out the early onset Alzheimer’s Association website at: https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset.
Myth 6: Alzheimer’s disease and other dementias only affect memory.
Reality: Although Alzheimer’s disease predominantly affects short-term memory, it also often affects other areas of cognition including visuospatial abilities (e.g ability to estimate differences), language abilities (e.g. trouble with speaking), and executive function (e.g. planning, organizing, ability to manage impulses, self-checking).
Additionally, between 80 and 97% of patients with dementia experience some form of psychiatric symptoms during the course of their illness. Depression and apathy (lack of motivation, and inertia) are among the most frequent of these symptoms. Other psychiatric symptoms such as hallucinations, false beliefs, aggression, and wandering can also arise as the disease progresses. These psychiatric symptoms often cause significant caregiver distress. Contact the Alzheimer’s Association at www.alz.org/ or 1.800.272.3900 to learn more about managing these behavioral symptoms, or to join a caregiver support group.
Frontotemporal dementia can often present as new behavioral changes or psychiatric symptoms starting in a persons’ 40’s - 70’s. This type of presentation can lead to a misdiagnosis of psychiatric disorders before the proper diagnosis of frontotemporal dementia is made.
To learn more about frontotemporal dementia, check out the website for The Association for Frontotemporal Dementia at https://www.theaftd.org/.
Impact on Family Caregivers
Myth 7: Most people with Alzheimer’s disease live in nursing homes.
Reality: In the United States the vast majority (70%) of persons’ with Alzheimer’s disease live in the community setting. Predictors of nursing home use include caregiver burnout and depression, caregiver age, higher number of medical conditions (e.g. diabetes), greater impairments in function and greater overall dementia severity.
Myth 8: Most caregivers are able to take care of the person with dementia alone.
Reality: People with Alzheimer’s disease and other dementias usually rely on multiple unpaid family members, with 30% of older adults with dementia having 3 or more unpaid caregivers. Actually, spreading caregiving responsibilities among other family members and friends, can reduce caregiver burnout and prevent early nursing home placement. Hiring professional caregivers to assist with care, gives family caregivers more time off and can extend the person with dementia’s ability to stay at home.
Myth 9: Most caregivers take good care of their own health.
Reality: Caregivers of persons with dementia have higher rates of depression, substance abuse, hypertension, stroke, cognitive impairment and trouble fighting infections as compared with dementia over their own health, routinely postponing necessary healthcare, exercise, balanced eating, and enjoyable activities. Studies show that Self-care is an important aspect of caregiving. We like to share the analogy that caregiving is like when there is a pressure drop on an airplane and oxygen masks come down. You need to put your own oxygen mask on before you can help the person next to you. In other words, one has to take care of themselves in order to take care of others. This is easier said than done.
Myth 10: The primary caregiver’s and the person with dementia’s relationship stays the same during the disease process.
Reality: Unfortunately, this relationship becomes more unequal as the illness progresses. In the early stages of the illness, the person with dementia may still be able to make decisions independently. However, there comes a point in the illness where the person with dementia is no longer able to make decisions on their own, and may require others to make decisions on their behalf, even if the decision is one that the person with dementia disagrees with the decision (e.g. giving up driving). Similarly, with illness progression the person with dementia is less likely able to be there emotionally for their family members and becomes less able to control their behaviors. This imbalance in relationship can be isolating for the caregiver and in cases of partner or spousal caregivers can negatively impact a caregiver’s desire for intimacy with the partner suffering from dementia.
Myth 11: Transition in living environment from home to a nursing home or other long term care facility is a personal failure for the caregiver.
Reality: It is not uncommon for caregivers to feel this way, but this is not true. Caregiving is not something that can be done alone. It takes a team to care for a person with dementia. As the dementia progresses, caregiving needs can be more than the family caregivers can provide in the home setting (e.g. physical assistance, management of incontinence). Transition to an assisted living, memory care unit or nursing home, can provide the person with dementia more scheduled enjoyable activities. The new environment and change in duties for the primary caregiver can lead to a renewed ability to enjoy their time with the person with dementia.
Myth 12: There is nothing that can be done to reduce caregiver burnout.
Reality: Caregiver burn out is a combination of physical and psychological exhaustion related to providing care. Roughly 60% of dementia caregivers report their emotional stress related to caregiving as high or very high, and 40% report their physical stress to be high or very high. There are a lot of different actions that can prevent and reduce caregiver burnout. These include making sure the person with dementia receives treatment for their psychiatric and behavioral symptoms, attending caregiver support groups, increasing knowledge about dementia, time off from caregiving (at least 8 consecutive hours per week, and respite), use of adult day programs, exercising regularly, and receiving treatment for psychological distress.
For tips on caregiving please visit the NIH Website on Alzheimer’s disease Caregiving at: https://www.nia.nih.gov/health/alzheimers/caregiving.
Challenges for the Person with Dementia
Myth 13: Most people with dementia stop driving on their own.
The majority of patients with dementia stop driving as the result of a motor vehicle accident, getting lost or being forced to give up driving by family members or a healthcare provider. Sometimes people with mild dementia can safely drive, but the only way to be sure of this is to have the person take an occupational therapy driving assessment. All patients will have to retire from driving at some point in their illness. Medical societies and scientific research uniformly agree that people with dementia should stop driving once they are in the moderate stage of the illness.
Myth 14: Alzheimer’s disease cannot be treated.
Reality: There is no current cure for Alzheimer’s disease, meaning there are no medications that modify the underlying disease process. Treatment is different than cure though. There are treatments both medication and non-medication treatments that can help improve cognition, function and psychiatric and behavioral symptoms. The effects of these treatments are usually small in nature, but for some individuals can make a significant improvement in symptoms and quality of life.
Myth 15: Antipsychotic medications should never be used to treat behavioral symptoms of dementia.
Reality: Antipsychotic medications are specific types of psychiatric medications that treat hallucinations, delusions (false beliefs), aggression and agitation. Antipsychotic medications are high risk, but can be helpful and necessary at times to treat severe behavioral and psychiatric symptoms, when other non-medication and other medication treatments have been tried without success. There is an FDA black box warning for increased mortality associated with antipsychotic use in persons with dementia. There are also increased risks for infections (e.g. aspiration pneumonias), strokes, falls, and worsened cognitive impairment. However, these medications can sometimes improve a person’s quality of life and prevent injury to the person with dementia or prevent the individual from harming others.
The legal authorized decision maker for the patient should be informed of the risks and benefits of these medications and should weigh these risks and benefits together with the prescribing healthcare provider before starting one of these medications.
Myth 16: Planning for end-of-life care is not necessary until the severe stages of illness.
Reality: Deciding on end-of-life preferences early on in the disease process can make life easier in the future. My having the conversation about end-of-life treatment early in the disease process, the person with dementia is able to give more input on their preferences, this prevents having to guess what their wishes might be later on.
Some examples of these types of decisions are whether or not to have the person receive CPR if their heart stops or a breathing tube if their breathing stops. Would the person want to receive antibiotic treatment for an infection or be admitted to the hospital when their dementia is in the severe stage? Or would they want a feeding tube to sustain nutrition? There are usually not right or wrong answers to these questions, rather they are value and preference based questions.
When a person with dementia is in the severe stage of illness, a healthcare professional with the input of the person’s legally authorized representative can complete a Physician Orders for Life Sustaining Treatment (POLST). The POLST form when completed and signed, is an active order set for the patient in regards to preferences for resuscitation, antibiotics, intravenous hydration, and artificial nutrition. The orders are kept with the patient in the case that there is a medical emergency.
For more information about the Indiana POLST form visit the Indiana State Website at: https://www.in.gov/dhs/files/Indiana_EMS_POST_Educational_Packet.pdf.
If you have any questions or concerns about your memory and thinking, or are interested in learning more about participation in research, please contact the Indiana Alzheimer Disease Center by visiting our website, iadc.medicine.iu.edu, sending an email to iadc@iu.edu or call us at 317-963-5500 and someone will answer your questions.
References:
http://nationalacademies.org/HMD/Reports/2015/Cognitive-Aging.aspx
https://www.in.gov/dhs/files/Indiana_EMS_POST_Educational_Packet.pdf
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset
2019 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia. 2019;15(3):321-387.
He W, Goodkind D, Kowal P. U.S. Census Bureau, International Population Reports, P95/16-1, An Aging World: 2015, U.S. Government Publishing Office, Washington, D.C., 2016. Available at: http://www.census.gov/ content/dam/Census/library/publications/2016/demo/p95-16-1.pdf
U.S. Census Bureau. 2014 National Population Projections: Downloadable Files. Available at: https://www.census.gov/data/datasets/2014/demo/
About the Author:
Daniel Bateman, MD is a geriatric psychiatrist and assistant professor of psychiatry at Indiana University. He is also a clinical research scientist at the Regenstrief Institute’s Indiana University Center for Aging Research and a Co-Investigator and associate leader of the Indiana Alzheimer Disease Center, Outreach and Recruitment Core. Dr. Bateman’s research focuses on the neuropsychiatric manifestations of Alzheimer’s disease and using technology to support Alzheimer’s caregivers.
The Indiana Alzheimer Disease Center is an IN-CASE partner.
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