A discussion with Cheri Taylor, Executive Director of the Porterville Adult Day Services. If you live in the South Valley, you have a great resource and we recommend that you contact them and see if they can provide some help. Whether you are a caregiver or simply concerned about a loved one, Cheri and her staff go all out in order to provide respite and relief for all involved. Originally aired on 4/30/14.
Increasingly, evidence supports the idea that the immune system, which protects our bodies from foreign invaders, plays a part in Alzheimer’s disease. But the exact role of immunity in the disease is still a mystery.
A new Duke University study in mice suggests that in Alzheimer’s disease, certain immune cells that normally protect the brain begin to abnormally consume an important nutrient: arginine. Blocking this process with a small-molecule drug prevented the characteristic brain plaques and memory loss in a mouse model of the disease.
Published April 15 in the Journal of Neuroscience, the new research not only points to a new potential cause of Alzheimer’s but also may eventually lead to a new treatment strategy.
“If indeed arginine consumption is so important to the disease process, maybe we could block it and reverse the disease,” said senior author Carol Colton, professor of neurology at the Duke University School of Medicine, and a member of the Duke Institute for Brain Sciences.
The brains of people with Alzheimer’s disease show two hallmarks — ‘plaques’ and ‘tangles’ — that researchers have puzzled over for some time. Plaques are the build up of sticky proteins called beta amyloid, and tangles are twisted strands of a protein called tau.
In the study, the scientists used a type of mouse, called CVN-AD, that they had created several years ago by swapping out a handful of important genes to make the animal’s immune system more similar to a human’s.
Compared with other mice used in Alzheimer’s research, the CVN-AD mouse has it all: plaques and tangles, behavior changes, and neuron loss.
In addition, the gradual onset of these symptoms in the CVN-AD mouse gave researchers a chance to study its brain over time and to focus on how the disease begins, said the study’s first author Matthew Kan, an MD/PhD student in Colton’s lab.
Looking for immune abnormalities throughout the lifespan of the mice, the group found that most immune system components stayed the same in number, but a type of brain-resident immune cells called microglia that are known first responders to infection begin to divide and change early in the disease.
The microglia express a molecule, CD11c, on their surface. Isolating these cells and analyzing their patterns of gene activity, the scientists found heightened expression of genes associated with suppression of the immune system. They also found dampened expression of genes that work to ramp up the immune system.
“It’s surprising, because [suppression of the immune system is] not what the field has been thinking is happening in AD,” Kan said. Instead, scientists have previously assumed that the brain releases molecules involved in ramping up the immune system, that supposedly damage the brain.
The group did find CD11c microglia and arginase, an enzyme that breaks down arginine, are highly expressed in regions of the brain involved in memory, in the same regions where neurons had died.
Blocking arginase using the small drug difluoromethylornithine (DFMO) before the start of symptoms in the mice, the scientists saw fewer CD11c microglia and plaques develop in their brains. These mice performed better on memory tests.
“All of this suggests to us that if you can block this local process of amino acid deprivation, then you can protect — the mouse, at least — from Alzheimer’s disease,” Kan said.
DFMO is being investigated in human clinical trials to treat some types of cancer, but it hasn’t been tested as a potential therapy for Alzheimer’s. In the new study, Colton’s group administered it before the onset of symptoms; now they are investigating whether DFMO can treat features of Alzheimer’s after they appear.
Does the study suggest that people should eat more arginine or take dietary supplements? The answer is ‘no,’ Colton said, partly because a dense mesh of cells and blood vessels called the blood-brain barrier determines how much arginine will enter the brain. Eating more arginine may not help more get into the sites of the brain that need it. Besides, if the scientists’ theory is correct, then the enzyme arginase, unless it’s blocked, would still break down the arginine.
“We see this study opening the doors to thinking about Alzheimer’s in a completely different way, to break the stalemate of ideas in AD,” Colton said. “The field has been driven by amyloid for the past 15, 20 years and we have to look at other things because we still do not understand the mechanism of disease or how to develop effective therapeutics.”
Story Source:
The above post is reprinted from materials provided by Duke University. Note: Materials may be edited for content and length.
Vascular dementia is the second most common cause of dementia, after AD. It is caused by brain damage from cerebrovascular or cardiovascular problems – usually strokes. It also may result from genetic diseases, endocarditis (infection of a heart valve), or amyloid angiopathy (a process in which amyloid protein builds up in the brain’s blood vessels, sometimes causing hemorrhagic or “bleeding” strokes). In many cases, it may coexist with AD. The incidence of vascular dementia increases with advancing age and is similar in men and women.
Symptoms of vascular dementia often begin suddenly, frequently after a stroke. Patients may have a history of high blood pressure, vascular disease, or previous strokes or heart attacks. Vascular dementia may or may not get worse with time, depending on whether the person has additional strokes. In some cases, symptoms may get better with time. When the disease does get worse, it often progresses in a stepwise manner, with sudden changes in ability. Vascular dementia with brain damage to the mid-brain regions, however, may cause a gradual, progressive cognitive impairment that may look much like AD. Unlike people with AD, people with vascular dementia often maintain their personality and normal levels of emotional responsiveness until the later stages of the disease.
People with vascular dementia frequently wander at night and often have other problems commonly found in people who have had a stroke, including depression and incontinence.
There are several types of vascular dementia, which vary slightly in their causes and symptoms. One type, called multi-infarct dementia (MID), is caused by numerous small strokes in the brain. MID typically includes multiple damaged areas, called infarcts, along with extensive lesions in the white matter, or nerve fibers, of the brain.
Because the infarcts in MID affect isolated areas of the brain, the symptoms are often limited to one side of the body or they may affect just one or a few specific functions, such as language. Neurologists call these “local” or “focal” symptoms, as opposed to the “global” symptoms seen in AD, which affect many functions and are not restricted to one side of the body.
Although not all strokes cause dementia, in some cases a single stroke can damage the brain enough to cause dementia. This condition is called single-infarct dementia. Dementia is more common when the stroke takes place on the left side (hemisphere) of the brain and/or when it involves the hippocampus, a brain structure important for memory.
Another type of vascular dementia is called Binswanger’s disease. This rare form of dementia is characterized by damage to small blood vessels in the white matter of the brain (white matter is found in the inner layers of the brain and contains many nerve fibers coated with a whitish, fatty substance called myelin). Binswanger’s disease leads to brain lesions, loss of memory, disordered cognition, and mood changes. Patients with this disease often show signs of abnormal blood pressure, stroke, blood abnormalities, disease of the large blood vessels in the neck, and/or disease of the heart valves. Other prominent features include urinary incontinence, difficulty walking, clumsiness, slowness, lack of facial expression, and speech difficulty. These symptoms, which usually begin after the age of 60, are not always present in all patients and may sometimes appear only temporarily. Treatment of Binswanger’s disease is symptomatic, and may include the use of medications to control high blood pressure, depression, heart arrhythmias, and low blood pressure. The disorder often includes episodes of partial recovery.
Another type of vascular dementia is linked to a rare hereditary disorder called CADASIL, which stands for cerebral autosomal dominant arteriopathy with subcortical infarct and leukoencephalopathy. CADASIL is linked to abnormalities of a specific gene, Notch3, which is located on chromosome 19. This condition causes multi-infarct dementia as well as stroke, migraine with aura, and mood disorders. The first symptoms usually appear in people who are in their twenties, thirties, or forties and affected individuals often die by age 65. Researchers believe most people with CADASIL go undiagnosed, and the actual prevalence of the disease is not yet known.
Alzheimer’s disease is the most common cause of dementia in people aged 65 and older.
In most people, symptoms of AD appear after age 60. However, there are some early-onset forms of the disease, usually linked to a specific gene defect, which may appear as early as age 30. AD usually causes a gradual decline in cognitive abilities, usually during a span of 7 to 10 years. Nearly all brain functions, including memory, movement, language, judgment, behavior, and abstract thinking, are eventually affected.
AD is characterized by two abnormalities in the brain: amyloid plaques and neurofibrillary tangles. Amyloid plaques, which are found in the tissue between the nerve cells, are unusual clumps of a protein called beta amyloid along with degenerating bits of neurons and other cells.
Neurofibrillary tangles are bundles of twisted filaments found within neurons. These tangles are largely made up of a protein called tau. In healthy neurons, the tau protein helps the functioning of microtubules, which are part of the cell’s structural support and deliver substances throughout the nerve cell. However, in AD, tau is changed in a way that causes it to twist into pairs of helical filaments that collect into tangles. When this happens, the microtubules cannot function correctly and they disintegrate. This collapse of the neuron’s transport system may impair communication between nerve cells and cause them to die.
Researchers do not know if amyloid plaques and neurofibrillary tangles are harmful or if they are merely side effects of the disease process that damages neurons and leads to the symptoms of AD. They do know that plaques and tangles usually increase in the brain as AD progresses.
In the early stages of AD, patients may experience memory impairment, lapses of judgment, and subtle changes in personality. As the disorder progresses, memory and language problems worsen and patients begin to have difficulty performing activities of daily living, such as balancing a checkbook or remembering to take medications. They also may have visuospatial problems, such as difficulty navigating an unfamiliar route. They may become disoriented about places and times, may suffer delusions (such as the idea that someone is stealing from them or that their spouse is being unfaithful), and may become short-tempered and hostile. During the late stages of the disease, patients begin to lose the ability to control motor functions. They may have difficulty swallowing and lose bowel and bladder control. They eventually lose the ability to recognize family members and to speak. As AD progresses, it begins to affect the person’s emotions and behavior. Most people with AD eventually develop symptoms such as aggression, agitation, depression, sleeplessness, or delusions.
On average, patients with AD live for 8 to 10 years after they are diagnosed. However, some people live as long as 20 years. Patients with AD often die of aspiration pneumonia because they lose the ability to swallow late in the course of the disease.
Dementia, Alzheimer’s, senility, forgetfulness. All of these words point to an experience. But do they point to the same one? Are they different? Are they the same?
I often hear these words thrown around interchangeably. Here I hope to give some etymological clarity. Aging in America is confusing. By using clear language, I hope we can communicate more effectively about our experiences. Through sharing experiences we also share wisdom to age more playfully.
I work in the field of psychology, which uses the DSM as its diagnostic manual. It is based on this that I will share the different types of dementia, or as it is now clinically called, neurocognitive disorder.
This brings us to our first language issue — dementia or NCD are interchangeable and are overarching terms for all that will follow. Below are all types of dementia or subtypes of NCD.
After someone is determined to be experiencing dementia, a subtype allows the experience to be further defined according to the known or presumed cause as well as the main characteristics, timeline, and symptom set of the dementia.
Knowing a subtype can help give behaviors meaning and offer understanding, as well as offering a way to share best practices for living with dementia. There is a wealth of research on each of these. Below is a very basic overview meant to be used as a starting point of understanding.
1. Alzheimer’s disease — Alzheimer’s is named for the doctor who found the pathologies believed to be the cause. Although the exact cause for the behaviors labeled as Alzheimer’s is still unknown, it is thought to be inherited genetically. Alzheimer’s varies from other dementias in that it’s progression is steady and gradual. For a diagnosis of probable Alzheimer’s (probable because the tangles from which its name is derived can only be verified during a postmortem brain autopsy) there must be a decline in memory, learning and one other domain.
2. Frontal Temporal Dementia (FTD) or Frontotemporal lobar degeneration — This dementia is named for the part of the brain it affects most — the frontal lobe. FTD seems to appear suddenly and then progresses gradually. There is a behavioral and language variant. The behavioral variant is marked by disinhibition and changes in social behavior. The language variant results in a dramatic change in language ranging from speech production to word comprehension.
3. Lewy Body Disease — This type is also named for its assumptive cause — lewy bodies in the brain. Those with Lewy Body disease experience fluctuating cognition levels. This disease is also marked by detailed visual hallucinations. These hallucinations are not psychosis. Unfortunately, antipsychotics are often given to treat these hallucinations. These drugs are contraindicated or not recommended for people with a Lewy Body diagnosis and can make symptoms worsen. Lewy Body also has features of parkinsonism. There are more physical changes associated with Lewy Body than other dementias.
The remaining types are named for their cause; their exact symptoms vary based on the area of the brain which was damaged and how extensive the damage is.
4. NCD due to vascular disease — The onset usually coincides with a cerebrovascular event — a disruption of blood supply to the brain, such as a stoke.
5. NCD due to traumatic brain injury — There must be evidence of an injury to the brain such as an impact to the head, either at a single moment or repeated over time such as multiple concussions from playing a contact sport.
6. Substance or medication induced — Damage has been done to the brain through the use of substances or medication. The symptoms remain after usual duration of intoxication or withdrawal.
7. Due to HIV infection — There is evidence of HIV infection and the dementia is not better attributed to another type.
8. Due to Prion disease — There is evidence of prion disease as well as rapid progression of NCD symptoms.
9. Due to Parkinson’s Disease — Parkinson’s is present before the NCD.
10. Due to Huntington’s Disease — Huntington’s is diagnosed before NCD, or there is family history or genetic testing to support the diagnosis.
In addition to these 10 types there are also the diagnoses of “NCD due to another medical condition” as well as “NCD due to multiple etiologies,” meaning that more than one of these types are present at the same time.
Every person is unique and so is their experience of dementia.
Understanding these broad categories can help us to share experiences and find helpful resources. Only a medical doctor or licensed mental health professional can offer a diagnosis. These same people can be very helpful in connecting you to local resources such as support groups, therapeutics, educational programs and medical resources.
Dementia is a term used to describe various symptoms of cognitive decline such as forgetfulness, but is not a clinical diagnosis itself until an underlying disease or disorder has been identified.
Dementia is a collective term used to describe the problems that people with various underlying brain disorders or damage can have with their memory, language and thinking. Alzheimer’s disease is the best known and most common disorder under the umbrella of dementia.
Contents of this article:
Dementia is not a single disease in itself, but a general term to describe symptoms such as impairments to memory, communication and thinking.1
While the likelihood of having dementia increases with age, it is not a normal part of aging. Before we had today’s understanding of specific disorders, “going senile” used to be a common phrase for dementia (“senility”), which misunderstood it as a standard part of getting old. 1,2
Light cognitive impairments, by contrast, such as poorer short-term memory, can happen as a normal part of aging (we slowly start to lose brain cells as we age beyond our 20s3). This is known as age-related cognitive decline, not dementia, because it does not cause the person or the people around them any problems.1 Dementia describes two or more types of symptom that are severe enough to affect daily activities.
Symptoms that are classed as “mild cognitive impairment” – which, unlike cognitive decline, are not a normal part of aging – do not qualify as dementia either, since these symptoms are not severe enough.1 For some people though, this milder disease leads to dementia later on.4
A number of brain disorders with more severe symptoms are classified as dementias, with Alzheimer’s disease being the best known and most common.
An analysis of the most recent census estimates that 4.7 million people aged 65 years or older in the US were living with Alzheimer’s disease in 2010.5 The Alzheimer’s Association has used this analysis to number-crunch the extent of the disorder in its 2013 report. It estimates that:
The non-profit organization says Alzheimer’s accounts for between 60% and 80% of all cases of dementia, with vascular dementia caused by stroke being the second most common type.
All dementias are caused by brain cell death,1 and neurodegenerative disease – progressive brain cell death that happens over a course of time – is behind most dementias.4,6
But as well as progressive brain cell death like that seen in Alzheimer’s disease, dementia can be caused by a head injury, a stroke or a brain tumor, among other causes.6
Some of the causes are simpler to understand in terms of how they affect the brain and lead to dementia:1
Some types of traumatic brain injury – particularly if repetitive, such as received by sports players – have been linked to certain dementias appearing later in life. Evidence is weak, however, that a single brain injury will raise the likelihood of having a degenerative dementia such as Alzheimer’s disease.7
Dementia can also be caused by:1,2,8
Alzheimer’s dementia is caused by progressive brain cell death. Estimates range between 60% and 80% for the proportion of all cases of dementia being accounted for by Alzheimer’s disease.2 In the US, about 5.3 million people are thought to have the disorder among the estimated 6.8 million individuals who have some form of dementia.4
Alzheimer’s is thought to be caused by “plaques” between the dying cells in the brain and “tangles” within the cells (both are protein abnormalities: a build-up of “beta-amyloid” in plaques and the disintegration of “tau” protein in tangles).
These inclusions in the brain are always present with the disorder but whether they are themselves the cause, or if there is some other underlying process, is not known – and there is some overlap with other disorders that show similar changes in brain cells.1,9
The brain tissue in a person with Alzheimer’s has progressively fewer nerve cells and connections, and the total brain size shrinks.1,9
See the Medical News Today Alzheimer’s disease page for more detailed information about this specific type of dementia.
Dementia with Lewy bodies is also caused by neurodegeneration linked to abnormal structures in the brain. Here, the brain changes involve a protein called alpha-synuclein.10
Mixed dementia refers to a diagnosis of two or three types occurring together. A person may show both Alzheimer’s disease and vascular dementia at the same time. Or the combination could be Lewy bodies and Alzheimer’s. There can also be a combination of all three types.10
Parkinson’s disease is also marked by the presence of Lewy bodies. While the part of the brain affected means there are classic movement symptoms, people with Parkinson’s can also go on to develop dementia symptoms as the degenerative changes in the brain gradually spread.10
Huntington’s disease is similar to Parkinson’s in the respect of being classically marked by uncontrolled movements yet having dementia as a component. It results in mood changes, too. Huntington’s is an inherited condition caused by a single faulty gene. This can produce the disease at any age – as young at 2 years of age and as old as 80, but typically between the ages of 30 and 50 years.10
Other disorders leading to symptoms of dementia include:10
Recent developments on causes of dementia from MNT news
Link found between dementia and vitamin D deficiency – In what is regarded as the first large, population-based study of its kind, a team of researchers has found a link between vitamin D consumption and the risk of developing dementia. Older people who do not get enough vitamin D could double their risk of developing the condition.
Traumatic brain injury in older adults linked to increased dementia risk – A study published in JAMA Neurologysuggests that for adults aged 55 years and older, traumatic brain injury may be linked to an increased risk of dementia.
Does poor sleep increase risk of dementia? – While sleep protects both physical and mental health, some people experience better sleep than others. Now, new research has associated poor sleep with an increased risk of dementia as a result of changes that occur within the brain.
The symptoms of dementia experienced by patients, or noticed by people close to them, are exactly the same signs that healthcare professionals look for. Therefore, detailed information on these is given in the next section about tests and diagnosis.
A person with dementia may show any of the following problems, mostly due to memory loss – some of which they may notice (or become frustrated with) themselves, while others may only be picked up by carers or healthcare workers as a cause for concern. The signs used to compile this list are published by the American Academy of Family Physicians (AAFP) in the journal American Family Physician:6
The Alzheimer’s Association has put together Know the 10 signs – a PDF document listing real-life examples of how this type of dementia can affect people.
All dementias are caused by brain cell death,1 and neurodegenerative disease – progressive brain cell death that happens over a course of time – is behind most dementias.4,6
But as well as progressive brain cell death like that seen in Alzheimer’s disease, dementia can be caused by a head injury, a stroke or a brain tumor, among other causes.6
Some of the causes are simpler to understand in terms of how they affect the brain and lead to dementia:1
Some types of traumatic brain injury – particularly if repetitive, such as received by sports players – have been linked to certain dementias appearing later in life. Evidence is weak, however, that a single brain injury will raise the likelihood of having a degenerative dementia such as Alzheimer’s disease.7
Dementia can also be caused by:1,2,8
Alzheimer’s dementia is caused by progressive brain cell death. Estimates range between 60% and 80% for the proportion of all cases of dementia being accounted for by Alzheimer’s disease.2 In the US, about 5.3 million people are thought to have the disorder among the estimated 6.8 million individuals who have some form of dementia.4
Alzheimer’s is thought to be caused by “plaques” between the dying cells in the brain and “tangles” within the cells (both are protein abnormalities: a build-up of “beta-amyloid” in plaques and the disintegration of “tau” protein in tangles).
These inclusions in the brain are always present with the disorder but whether they are themselves the cause, or if there is some other underlying process, is not known – and there is some overlap with other disorders that show similar changes in brain cells.1,9
The brain tissue in a person with Alzheimer’s has progressively fewer nerve cells and connections, and the total brain size shrinks.1,9
See the Medical News Today Alzheimer’s disease page for more detailed information about this specific type of dementia.
Dementia with Lewy bodies is also caused by neurodegeneration linked to abnormal structures in the brain. Here, the brain changes involve a protein called alpha-synuclein.10
Mixed dementia refers to a diagnosis of two or three types occurring together. A person may show both Alzheimer’s disease and vascular dementia at the same time. Or the combination could be Lewy bodies and Alzheimer’s. There can also be a combination of all three types.10
Parkinson’s disease is also marked by the presence of Lewy bodies. While the part of the brain affected means there are classic movement symptoms, people with Parkinson’s can also go on to develop dementia symptoms as the degenerative changes in the brain gradually spread.10
Huntington’s disease is similar to Parkinson’s in the respect of being classically marked by uncontrolled movements yet having dementia as a component. It results in mood changes, too. Huntington’s is an inherited condition caused by a single faulty gene. This can produce the disease at any age – as young at 2 years of age and as old as 80, but typically between the ages of 30 and 50 years.10
Other disorders leading to symptoms of dementia include:10
Recent developments on causes of dementia from MNT news
Link found between dementia and vitamin D deficiency – In what is regarded as the first large, population-based study of its kind, a team of researchers has found a link between vitamin D consumption and the risk of developing dementia. Older people who do not get enough vitamin D could double their risk of developing the condition.
Traumatic brain injury in older adults linked to increased dementia risk – A study published in JAMA Neurologysuggests that for adults aged 55 years and older, traumatic brain injury may be linked to an increased risk of dementia.
Does poor sleep increase risk of dementia? – While sleep protects both physical and mental health, some people experience better sleep than others. Now, new research has associated poor sleep with an increased risk of dementia as a result of changes that occur within the brain.
The symptoms of dementia experienced by patients, or noticed by people close to them, are exactly the same signs that healthcare professionals look for. Therefore, detailed information on these is given in the next section about tests and diagnosis.
A person with dementia may show any of the following problems, mostly due to memory loss – some of which they may notice (or become frustrated with) themselves, while others may only be picked up by carers or healthcare workers as a cause for concern. The signs used to compile this list are published by the American Academy of Family Physicians (AAFP) in the journal American Family Physician:6
The Alzheimer’s Association has put together Know the 10 signs – a PDF document listing real-life examples of how this type of dementia can affect people.
Adult day centers offer people with Alzheimer’s and other dementias the opportunity to be social and to participate in activities in a safe environment.
If you are a full-time caregiver, adult day centers can provide a much needed break. While the person with Alzheimer’s is at the center, you’ll have time to rest, run errands or finish other tasks. If you find yourself feeling guilty, ask yourself this, “If I wear myself out to the point of total exhaustion, what good will I be to the person with dementia?”
If you are a caregiver that works during the day, an adult day center can be very helpful as you try to balance a job with caregiving duties. Hours of service vary at each center, but some are open from seven to 10 hours per day. Some also may offer weekend and evening hours, and transportation and meals are often provided.
For people with Alzheimer’s and dementia, adult day centers provide a chance to be social and to participate in staffed activities such as music and exercise programs. Keep in mind that the person with dementia will need time to adjust to the experience of going to the center. Some people may resist going at first, but they often look forward to the visit after several weeks of attending, meeting people and joining in activities.
It’s not easy to witness a loved one going through some of the more significant symptoms and signs of Alzheimer’s disease. Going over to visit an aging parent who was diagnosed with Alzheimer’s more than five years ago, he or she not recognizing you, or even talking about people who have been deceased for many years can be emotionally traumatizing for many individuals.
When loved ones begin talking about people who haven’t been around in many years, mentioning that they want to give them a call, it can be a difficult situation. They may have a disconnection with the current time and have no concept that their loved one has passed away a long time ago.
This creates a difficult situation for them as well as any caregiver working with them on a regular basis. What happens when the senior is picking up the phone and trying to dial a specific number? What happens when they are convinced that they absolutely must talk to this person before much time goes by?
Some people may try to lie and tell the individual that the person is away on a vacation. They might attempt to assuage the senior with Alzheimer’s and hope that they will forget this little episode before long.
So what happens when they pick up the phone to dial the number? If they happen to remember the phone number, this might require some quick thinking on the part of you or some other family member or caregiver who happens to be with them at that moment.
You’re confronted with a delicate situation to handle. Telling them the truth can cause confusion, anxiety, and potentially even a verbal or physical outburst. The path of least resistance is often the most tempting one to travel. What happens as the senior completes the dialing of that phone and receives a recording message that the number is no longer in service or somebody picks up on the other end and has never heard of that person? That can lead to even more confusion, stress and anxiety.
The best way to deal with this particular type of situation is with honesty and tact. Focusing on redirection can also help, as long as there is a plan in place for redirecting the individual at that time.
Dealing with somebody with Alzheimer’s is a delicate situation at times and that’s why it’s beneficial to rely on the services of an experienced Alzheimer’s care provider.
In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.
In Vern’s Words
I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.
I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.
I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.
At first I didn’t want to share my diagnosis with others. I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.
My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat. She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.
In Karen’s Words
Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.
I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.
I have found the Alzheimer’s Association website alz.org to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.
I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.
When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.
Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.
Vern and Karen’s story continues. And they are not alone.
In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.
Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.
