FAQs

This chart can help elucidate these important distinctions. Forgetting where our keys are is very different from forgetting what they are or how they are used, for example. Depression can cause memory loss also, but people who are depressed tend to talk more openly about it. In the early stages of dementia, there is often defensiveness or shame about the memory loss.

Causes and Characteristics of Dementia*

Normal Age-Related ForgetfulnessMild Cognitive ImpairmentDementia
Sometimes misplaces keys, eyeglasses or other items.Frequently misplaces items.Sometimes forgets what keys, eyeglasses or other items are used for.
Momentarily forgets an acquaintance’s name.Frequently forgets people’s names and is slow to recall them.May not remember knowing a person.
Occasionally has to “search” for a word.Has more difficulty using the right words.Begins to lose language skills May withdraw from social interaction.
Occasionally forgets to run an errand.Begins to forget important events and appointments.Loses sense of time. Doesn’t know what day it is.
May forget an event from the distant past.May forget more recent events or newly-learned information.Has serious impairment of short term memory. Has difficulty learning and remembering new information.
When driving, may momentarily forget where to turn; quickly orients self.May temporarily become lost more often. May have trouble understanding and following a map.Becomes easily disoriented or lost in familiar places, sometimes for hours.
Jokes about memory loss.Worries about memory loss. Family and friends notice lapses.May have little or no awareness cognitive problems.

* For more information on these and other causes of dementia, visit alz.org/dementia.

Your caregiving plan will be influenced by the specific diagnosis your loved one is given. People with Lewy Body dementia often experience visual hallucinations and they can have very good days when they are very lucid and remember things quite well. Take a look at this chart for some guidance.

CauseCharacteristics
Alzheimer’s diseaseMost common cause of dementia; accounts for an estimated 60 percent to 80 percent of cases. About half of these cases involve solely Alzheimer’s pathology; many have evidence of pathologic changes related to other dementias. This is called mixed dementia (see mixed dementia in this table). Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and depression are also often early symptoms. Later symptoms include impaired communication, disorientation, confusion, poor judgment, behavior changes and, ultimately, difficulty speaking, swallowing and walking. Revised criteria and guidelines for diagnosing Alzheimer’s were proposed and published in 2011. They recommend that Alzheimer’s be considered a slowly progressive brain disease that begins well before clinical symptoms emerge. The hallmark pathologies of Alzheimer’s are the progressive accumulation of the protein fragment beta-amyloid (plaques) outside neurons in the brain and twisted strands of the protein tau (tangles) inside neurons. These changes are eventually accompanied by the damage and death of neurons.
Vascular dementiaPreviously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause of dementia than Alzheimer’s, accounting for about 10 percent of dementia cases. However, it is very common in older individuals with dementia, with about 50 percent having pathologic evidence of vascular dementia (infarcts). In most cases, the infarcts coexist with Alzheimer’s pathology (see mixed dementia in this table). Impaired judgment or impaired ability to make decisions, plan or organize is more likely to be the initial symptom, as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s. Vascular dementia occurs most commonly from blood vessel blockage or damage leading to infarcts (strokes) or bleeding in the brain. The location, number and size of the brain injuries determine whether dementia will result and how the individual’s thinking and physical functioning will be affected. In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s (and vice versa). That practice is no longer considered consistent with the pathologic evidence, which shows that the brain changes of Alzheimer’s and vascular dementia commonly coexist. When evidence of two or more causes of dementia are present at the same time, the individual is considered to have mixed dementia (see mixed dementia in this table).
Dementia with Lewy Bodies (DLB)People with DLB have some of the symptoms common in Lewy Alzheimer’s, but are more likely to have initial or early symptoms of sleep disturbances, well-formed visual hallucinations and slowness, gait imbalance or other parkinsonian movement features. These features, as well as early visuospatial impairment, may occur in the absence of significant memory impairment. Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein that accumulate in neurons. When they develop in a part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates in the brains of people with Parkinson’s disease (PD), in which it is accompanied by severe neuronal loss in a part of the brain called the substantia nigra. While people with DLB and PD both have Lewy bodies, the onset of the disease is marked by motor impairment in PD and cognitive impairment in DLB. The brain changes of DLB alone can cause dementia. But very commonly brains with DLB have coexisting Alzheimer’s pathology. In people with both DLB and Alzheimer’s pathology, symptoms of both diseases may emerge and lead to some confusion in diagnosis. Vascular dementia can also coexist and contribute to the dementia. When evidence of more than one dementia is present, the individual is said to have mixed dementia (see mixed dementia in this table).
Frontotemporal lobar degeneration (FTLD)Includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal degeneration and progressive supranuclear palsy. Typical early symptoms include marked changes in personality and behavior and difficulty with producing or comprehending language. Unlike Alzheimer’s, memory is typically spared in the early stages of disease. Nerve cells in the front (frontal lobe) and side regions (temporal lobes) of the brain are especially affected, and these regions become markedly atrophied (shrunken). In addition, the upper layers of the cortex typically become soft and spongy and have protein inclusions (usually tau protein or the transactive response DNA-binding protein). The brain changes of behavioral-variant FTLD may occur in those age 65 years and older, similar to Alzheimer’s disease, but most people with this form of dementia develop symptoms at a younger age (at about age 60). In this younger age group, FTLD is the second most common degenerative dementia.
Mixed dementiaCharacterized by the hallmark abnormalities of more than one cause of dementia — most commonly Alzheimer’s combined with vascular dementia, followed by Alzheimer’s with DLB, and Alzheimer’s with vascular dementia and DLB. Vascular dementia with DLB is much less common. Recent studies suggest that mixed dementia is more common than previously recognized, with about half of those with dementia having pathologic evidence of more than one cause of dementia.
Parkinson’s disease (PD)Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The aggregates are thought to cause degeneration of the nerve cells that produce dopamine. The incidence of PD is about one-tenth that of Alzheimer’s. As PD progresses, it often results in dementia secondary to the accumulation of Lewy bodies in the cortex (similar to DLB) or the accumulation of beta-amyloid clumps and tau tangles (similar to Alzheimer’s disease).
Creutzfeldt-Jakob diseaseThis very rare and rapidly fatal disorder impairs memory and disease (PD) coordination and causes behavior changes. Results from a misfolded protein (prion) that causes other proteins throughout the brain to misfold and malfunction. May be hereditary (caused by a gene that runs in one’s family), sporadic (unknown cause) or caused by a known prion infection. A specific form called variant Creutzfeldt-Jakob disease is believed to be caused by consumption of products from cattle affected by mad cow disease.
Normal pressure hydrocephalusSymptoms include difficulty walking, memory loss and inability to control urination. Accounts for less than 5 percent of dementia cases. Caused by impaired reabsorption of cerebrospinal fluid and the consequent build-up of fluid in the brain, increasing pressure in the brain. People with a history of brain hemorrhage (particularly subarachnoid hemorrhage) and meningitis are at increased risk. Can sometimes be corrected with surgical installation of a shunt in the brain to drain excess fluid.

This is a tough one for many people. One approach is to call the DMV and let them know you are concerned about your loved one. They will send out a letter that asks the person to come in for a driving test. This way, you don't have to be the bad guy.

There are other possibilities as well. I'm happy to discuss your particular situation and help you and your family brainstorm.

Driving represents freedom and independence for many people. It's hard to give it up. Building in safe ways for people to maintain some autonomy in other areas of life can be very helpful.

Sometimes people resist being bathed. They may have lost some sense of smell and don't know that they really do need a shower. They may feel ashamed of being naked with you present. It's also possible that they are frightened of water. They may have had a near drowning incident or witnessed one in the past. As dementia progresses, old traumas and fears can re-emerge.

Sometimes you can create a beautiful and soothing spa like environment in your bathroom. You can use aromatherapy, music, and candles. The room should never be too dim of course because that may increase the risk of falling. When bathtime becomes a soothing ritual, it can set the stage for a good day or nights rest.

If embarrassment is an issue, you can allow someone to be partially covered, even in the water. Using a light and small sheet or light blanket, you can drape the fabric around them, like a shaw and clean one area at a time, moving the drape around. This allows for some measure of privacy and control.

You may also need someone who is the same sex as your loved one to manage bath time.

It is ok to do sponge baths too.

Every person is different and it takes some trial and error to discover what might work in your case.

Propose a toast and drink water with them, perhaps in a special cup that signals celebration.

I used to hand my Dad a cup and hold up mine saying, "Here's to the boys who stormed the beaches, Pop" That worked every time!

Exactly the way they help our children. By treating vulnerable people with deep respect and honoring their needs, we can develop trust and transcend the power struggles that are often part of caregiving. Even the materials used in the Montessori approach can be wonderful with older adults. For example, one man I knew loved to match wood tiles by type and talk about the grains and colors. He was a carpenter and these little tiles helped him connect with his love of building. He was also able to be the wood expert, which he really enjoyed.

We can arrange silk flowers, fold cloth, match spices by scent, set tables, and on and on. There is great joy in feeling useful so it's important to tie these activities to something real. An older adult will want to fold napkins for a real meal, not just for the sake of being kept busy.

The possibilities are endless and a lot of fun.

Diagnosis, even of suspected Alzheimer's, can be characterized by a lot of shock and fear, not only for your loved one, but for you as well. It may be that the person in your care is able and willing to accept the diagnosis. If so, they may want to start discussing what the next steps are immediately. It is also possible that they will be very resistant to accepting the diagnosis. It isn’t necessary for you to persuade them to do so at this time. Not only is it okay if they don’t accept it immediately, it is also okay if they never do. You don’t have to insist that your loved one accept the diagnosis—you don’t even have to use the word Alzheimer's. You will know what language they are comfortable with by listening to what language they use. If they talk about their "lapses" or "difficulties", it will be possible for you to say just what you need to about their care, using these same terms.

I do not advocate hiding a diagnosis of dementia from your loved one, but if it's the case that they are severely distressed each time the topic is discussed, it is helpful to alter the way it is discussed. This way, you can achieve some cooperation when implementing the interventions that are in the person's best interest. It used to be that diagnosis of Alzheimer's disease was hidden from patients. The rationale was that they may become suicidal. Medical professionals believed disclosing the diagnosis was cruel because the disease is irreversible and untreatable. These same reasons were also used to justify keeping a cancer diagnosis from patients in years past. In the case of Alzheimer's disease, the patient usually will not remember the diagnosis beyond the early stages. There are exceptions to this, of course. Individuals vary with respect to which memories they hold onto for a long time.

There are many issues for you to consider about how you disclose a diagnosis. My opinion is that it is best to tell the person in your care the truth about the diagnosis, gauge their reaction, and then create a way to discuss it moving forward that allows you to care for them without upsetting them or fighting with them every day. Usually this means changes in language. Using the words "memory troubles" instead of "Alzheimer's disease" is not the same thing as agreeing that there is no problem and no need to make changes at home. I recommend that you take a look at this year's "Facts and Figures" document, which you can view online, from the Alzheimer's association. There is a special report on disclosure of diagnosis that provides an in depth look at this issue. In my experience, on the first day that your loved one has been made aware of their cognitive decline, it's good to focus on reassurance, reminding them that you are here, that they will not be facing this alone, and that you know that there are lots of helpful techniques to assist memory that you can study together. You can listen to their feelings without trying to change them or fix them. Simple empathic listening to another person as a compassionate witness is a precious gift that is itself often far more supportive than giving advice right away or insisting they adopt another point of view. It's going to take time for the whole family to adjust to the changes that are coming. Everyone will experience adjustment and grief in their own way. There is no wrong way to grieve.
There was a time when the central feature of care for dementia patients was “reality orientation” in which patients were forced to hear the “literal truth.” For example, when a person with dementia woke up and said they were going to vote for Ronald Reagan today and that's why they needed to wear the red and blue dress, they would be told that Ronald Reagan is long gone, that it is not election day, and that they must accept reality. This is often well intentioned. It's understandable that we would think that persuading a person of what's actually going on around them would put an end to their confusion and be helpful.

Usually it does no good. Reality orientation is generally a recipe for disaster. It leads to constant argument, distrust, hurt feelings, and poor care. Even if you can convince them for a few moments, they will forget what you told them, but they will remember how they felt in your presence. In fact, their emotional memory may remain so intact that they distrust you for days or more despite their inability to articulate why. What we have come to understand now is that the reality going on inside the mind of someone experiencing progressive brain disease, is just as real for them as the correct date is for us. When we accept that they cannot change their inner reality to fit our outer one and learn to enter the world they are in, there can be a great improvement in communication, relationships, and quality of care.