Dementia is a collection of diseases that cause profound changes in mental health, but not all forms of dementia cause the same disabilities or the same levels of disability. Before beginning dementia care or even beginning to wonder what to do after a dementia diagnosis, it is important to understand some fundamental facts about the condition.
Here are 10 key pieces of information for achieving the best possible outcomes after a diagnosis of dementia.
Mild cognitive impairment isn't the same as dementia
"Senior moments" are inevitable as we get older. Everybody has them, possibly because there is just so much on our minds. Dementia isn't the same as normal age-related memory loss.
Sometimes mental lapses are more than just occasional, serious enough to be classified as "mild cognitive impairment." In this state, we aren't as sharp as we used to be, and we may not be able to make certain decisions without guidance, but we are basically still independent and fully capable of enjoying life.
Mild cognitive impairment may set in as early as age 60. It affects about 10 percent of people between the ages of 70 and 79, and up to 25 percent of people over 80. Mild cognitive impairment isn't necessarily permanent, but about 50 percent of people who are diagnosed with mild cognitive impairment eventually develop dementia.
Dementia isn't just Alzheimer's disease
Alzheimer's is the most common form of dementia, accounting for about half of all cases, but it is far from the only form of dementia. Common, disabling neurocognitive disorders include:
- As previously mentioned, Alzheimer's disease, which affects judgment and memory.
- Lewy body dementia and dementia in Parkinson's disease, in which memory may be intact but there are delusions and hallucinations.
- Frontotemporal dementia, a group of diseases including Pick's disease, frontotemporal lobar degeneration (FTLD), behavior variant frontotemporal dementia (bvFTD), which causes problems with behavior,\ and personality, primary progressive aphasia (PPA), which causes problems with speech, semantic variant PPA (svPPA), which causes problems in understanding language, and corticobasal syndrome (CBS) – problems with movement. Frontotemporal dementia is the most common form of dementia in people under the age of 60.
- And other less common forms of dementia including Huntington's disease, Creutzfeldt-Jakob disease-related dementia, dementia in people who have HIV or AIDS, Wernicke-Korsakoff syndrome, dementia caused by traumatic brain injury, and mild cognitive impairment.
- Vascular dementia may occur when multiple blood vessels in the brain have been compromised by stroke or atherosclerosis.
It's more common to have multiple disease processes that lead to dementia than it is to have just one. For instance, someone can have both Alzheimer's and frontotemporal dementia, or both Alzheimer's and Parkinson's disease.
Dementia is usually progressive.
Dementia progresses in stages. Most forms of dementia have a prodrome, a period of years or even decades in which there are changes in the brain, but no changes in intellectual function or behavior. This is the stage of dementia in which preventative measures may be effective.
The next stage of dementia is very mild cognitive decline. Forgetfulness may be a problem, or there may be minor problems with speech or understanding language. But this stage progresses to mild cognitive decline, which is more disruptive to daily life. There can be huge losses due to bad business judgment, or broken relationships due to changed emotional behavior caused by dementia. Or there can just be a general withdrawal from work, hobbies, social activities, friends, and family.
As mild cognitive decline progresses to moderate cognitive decline, dementia can cause loss of memory, there are dementia-related challenges in communicating with others, or both. People in this stage may stop eating a balanced diet, preferring a single food. Or people with dementia may neglect personal hygiene. This may also be the stage at which the delusions and hallucinations common in dementia begin to set in.
But dementia isn't always a death sentence.
There are a few forms of dementia that are reversible. Symptoms of Wernicke-Korsakoff disease may be partially reversed by vitamin treatment. Normal-pressure hydrocephalus often can be treated surgically. Dementia following fever or traumatic brain injury often can be corrected. And conditions that are frequently misdiagnosed as dementia, such as delirium and depression, are sometimes completely reversed.
Even when the progress of dementia is inevitable, it often can be slowed. Medical dementia treatments sometimes preserve memory, speech, movement, and judgment many years longer than expected. Daily activities for people with dementia can help boost their quality of life, and dementia patients should exercise for increased strength, balance, and brain power, too.
Dementia can strike at any time in life, not just in old age.
Younger adults can develop early-onset dementia, but dementia is not unknown in children, either. Anger, anxiety, uneasiness, inattention, mood swings, confusion about people and places, clumsiness, screaming, crying, and fear of people and places can be associated with any number of childhood stresses or psychiatric conditions, but sometimes they are the result of an especially early-onset form of dementia caused by hypothyroidism, cretinism, heavy metal poisoning, encephalitis, Batten disease, Niemann-Pick disease, or Lafora body disease. Children and teens may develop lysosomal storage disorders, leukodystrophies, and mitochondrial diseases. Some of these childhood dementias are treatable. Others are not.
Young adults may be stricken with HIV-related dementia. Severe malnutrition can trigger Wernicke-Korsakoff syndrome. Exposure to prions may lead to Creuzfeldt-Jakob syndrome. In mid-life, usually in their fifties, people born with Down sydrome often develop Alzheimer's disease, and people with genetic predispositions for frontotemporal dementia or Huntington's disease become symptomatic.
Dementia does not always involve memory loss.
When we think of dementia, many of us think of Alzheimer's disease, which gradually robs its victims of all their memories. But there are forms of dementia in which memory is conserved to the end of life.
Many people who have Lewy body disease or Parkinsonian dementia continue to be able to speak and to recognize family members. People who develop frontotemporal dementia may simply not care about events and people, that is, they become profoundly apathetic, but they often continue to have some memories. And in the reversible forms of dementia, memory loss may not be permanent.
When there is mild cognitive impairment with memory issues, it often progresses to Alzheimer's disease. But when there is mild cognitive impairment without memory problems, it often progresses to Lewy body disease.
Dementia care is enormously expensive in the United States
Americans pay more for medical insurance and more for medical care than in other countries. A diagnosis of mild cognitive impairment typically adds just $700 a year to a family's medical bills. (All figures here are in US dollars.) A diagnosis of mild to moderate neurocognitive disorder like Alzheimer's, if the person who has dementia can still live at home, brings about $6,000 per year in additional medical bills.
Paying for the home help someone who has mild to moderate dementia needs would cost about $8,000 at $15 per hour (a bare minimum in most of the country). Advanced dementia care adds about $10,000 a year to medical expenses, and if home help has to hired, the bill will be about $30,000 per year. Nursing homes in the US charge an average of $7,148 per month ($85,776 per year) for a shared room or $8,121 per month ($97,452 per year) for a private room. It is possible to purchase insurance that covers late-life nursing care, but it has to be purchased earlier in life, preferably before age 50, paid every month. It's not possible to get a policy after you have been diagnosed with dementia.
In the United States, Medicaid programs will cover basic nursing home expenses of people who can't afford to pay them on their own, but nearly every state requires any house, retirement accounts, bank accounts, and investment property to be sold to cover the cost of care.
Taking care of dementia requires considerable patience, skill, and energy
Dementia experts Nancy Mace and Peter Rabins describe the experience of spouses and adult children who take care of people who have dementia as the perpetual "36-hour day." Dementia care can become an all-consuming task, and very few families are unchanged by it.
What does caregiving for someone who has dementia require?
- A clear understanding of the particular form of dementia that has been diagnosed. If you are going to manage your loved one's affairs, you need to know what to expect and when to expect it. Not all kinds of dementia progress the same way, or cause the same disabilities. You need to know which things to bring to your doctor's attention, and when.
- A commitment to being the adult in the room. It can be a shock to switch roles with your parent. Taking care of someone who has dementia is not unlike taking care of a child, except the situation never gets better. There will be times you have to balance your loved one's dementia-related anxiety and agitation with certainty, anger with kindness, and risk with safety. Most people have to achieve their own emotional and intellectual growth to help their loved ones. And there will be many financial, logistical, and practical situations that require an ingenious response to survive with the resources you have.
- An understanding of your own limitations. It's not unusual for an adult caregiver of someone who has dementia to get sick and die after their parent dies. Many people wear out trying to do the right thing. Accept all the help you can get as soon as you can get it.
- But be realistic about how much help the parent or brother or sister or friend who has dementia will need. Encourage the settling of financial arrangements early on, and make sure powers of attorney, advance directives, wills, and conservatorships are recorded in legally enforceable form while the person who has dementia is still considered competent by the law.
Certain conditions are almost always followed by dementia.
Nearly everyone with Down syndrome (trisomy 21) develops Alzheimer's disease eventually. People who have Down syndrome are born with three copies of their twenty-first chromosome. This gives them three copies of the gene that codes the brain-destructive protein that causes Alzheimer's disease. This protein can start accumulating as early as the age of eight. Until recently, most children born with Down syndrome didn't live long enough to develop Alzheimer's disease, but now many survive to the age of 50 and beyond. Alzheimer's almost always appears in people with Down syndrome who live to be 55 or older.
But there is a condition that looks like dementia but isn't.
People display many of the same behaviors and disabilities in both dementia and delirium, but the two conditions are very different.
Dementia develops slowly, over a period of decades. Delirium comes on quickly, sometimes over a period of days. Dementia results from chronic changes to the brain. Delirium results from sudden changes to general health, such as an infection, exposure to a poison, surgery, anesthesia, head injury, alcohol withdrawal, or drug overdose.
Dementia is mostly a disease of old age. Delirium can occur at any age. Dementia often causes loss of memory and lapses of (or extinction of) judgment. Delirium often causes hallucinations, delusions, and the inability to distinguish wakefulness from sleep.
Both dementia and delirium are very common, but in different groups of people. In the United States, as many as 50 percent of people who live to be 85 eventually develop some form of dementia. And up to 30 percent of people who are sick enough to be admitted to hospital, and 80 percent of people admitted to intensive care, can be diagnosed with delirium. From 5 to 10 percent of people who have general surgery develop delirium during recovery from the operation. About 40 percent of people who have orthopedic surgery become delirious in recovery.
The tragedy of delirium is that it is frequently misdiagnosed. People who need nutrition, hydration, pain control, and sleep are diagnosed with serious psychiatric disorders. Many people suffering delirium are treated as if they had dementia. When they are given antipsychotic drugs, their symptoms typically do not improve, but they may develop real psychiatric disabilities as a result of inappropriate medication.
In many people over 60, production of stomach acid decreases so that the body fails to absorb adequate vitamin B12. Deficiency of this vitamin produces delirium. More than one elderly person has been diagnosed with moderate cognitive impairment or some form of dementia when the real problem was a vitamin B12 deficiency. It is always best to try nutrition first before committing to years of treatment without a valid diagnosis.Back to top