Icipating In Alzheimers Disease Clinical Trials
Everybody those with Alzheimers disease or MCI as well as healthy volunteers with or without a family history of Alzheimers may be able to take part in clinical trials and studies. Participants in Alzheimers clinical research help scientists learn how the brain changes in healthy aging and in Alzheimers. Currently, at least 270,000 volunteers are needed to participate in more than 250 active clinical trials and studies that are testing ways to understand, diagnose, treat, and prevent Alzheimers disease.
Volunteering for a clinical trial is one way to help in the fight against Alzheimers. Studies need participants of different ages, sexes, races, and ethnicities to ensure that results are meaningful for many people.
NIA leads the federal governments research efforts on Alzheimers. NIA-supported Alzheimers Disease Research Centers throughout the U.S. conduct a wide range of research, including studies of the causes, diagnosis, and management of the disease. NIA also sponsors the Alzheimers Clinical Trials Consortium, which is designed to accelerate and expand studies and therapies in Alzheimers and related dementias.
To learn more about Alzheimers clinical trials and studies:
- Talk to your health care provider about local studies that may be right for you.
Watch videos of participants in Alzheimers disease clinical trials talking about their experiences.
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Understand The Person And How The Dementia Affects Them
Do not make assumptions about how the person is feeling or what they might be going through each persons experience of living with dementia is different and is likely to change over time.
Many factors play a part: the form of dementia the person has, whether they have any other form of disability, their marital status, their circle of friends, where they live, their educational background, personality, personal wealth, former career, age, ethnicity and so on. Any one or a combination of these factors can affect a persons ability to deal with the changes they experience.
To gain an understanding of what it is like for a younger person to be diagnosed with dementia and to learn how the condition affects their lifestyle, why not read an autobiography by a person with dementia? Several autobiographies have been published, all written by people under the age of 65, including for example: Dancing with dementia: My story of living positively with dementia by Christine Bryden Just love me: My life turned upside down by Alzheimers by Jeanne Lee and Alzheimers from the inside out by Richard Taylor.
With a lot of hard work, a wonderful doctor, the passage of time, love from family and friends and other people with dementia, I have for the most part overcome this stigma.
Lynn Jackson, a woman with fronto-temporal dementia
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Memory Care Senior Living Options For Dementia & Alzheimer’s
When caring for someone with Alzheimer’s or Dementia becomes too difficult for the caregiver there are several senior living communities that specialize in memory care. To learn more about our Lifestyle Transitions Specialized Assisted Living and Memory Support community in Shelton, CT, please visit our website www.umh.org/wesley-village/lifestyle-transitions or contact us here!
About Elizabeth Bemis
In 1998, I drove past an assisted living community construction site, learned that it was part of United Methodist Homes and realized the next stop on my professional journey was to work for a mission driven organization. Soon after, I joined the team as Executive Director of our Middlewoods of Farmington community and later served as Regional Manager for the Middlewoods properties before accepting my current role as Vice President of Marketing, Promotions, and Assisted Living Operations. I enjoy spending time with my family, cooking, reading, walking, and love working alongside our staff, residents, and families to build strong communities that reflect the mission, vision, and values of United Methodist Homes.
Our Blog is a 2016 Platinum Generations Award Winner! The Generations Award is an annual international competition for excellence in senior marketing recognizing professionals who have communicated to the 50+ Mature Markets.
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Difficulty Determining Time Or Place
Losing track of dates and misunderstanding the passage of time as it occurs are also two common symptoms. Planning for future events can become difficult since they arent immediately occurring.
As symptoms progress, people with AD can become increasingly forgetful about where they are, how they got there, or why theyre there.
The Financial Implications Of Early
People with early-onset Alzheimers disease may be facing a daunting financial future, particularly if their job is their main source of income.
Those who are still working may be eligible for disability benefits or may be able to use benefits offered under the federal Family and Medical Leave Act, which allows up to 12 weeks of unpaid, job-protected leave each year for family and medical reasons with continuation of group health insurance coverage.
People who need to leave their jobs may be able to retain employer-sponsored healthcare coverage for as long as 36 months under the federal law COBRA.
The Health Insurance Marketplace in each state, created by the Affordable Care Act , is another option for healthcare coverage. ACA health plans cannot refuse coverage to people with preexisting conditions, meaning no one can be denied insurance because of an Alzheimers diagnosis.
The Social Security Administration has added early-onset Alzheimers disease to its list of conditions under theCompassionate Allowances initiative.
This means people younger than 65 who qualify have expedited access to Social Security Disability Insurance and Supplemental Security Income.
Talking with a financial planner who is familiar with elder care or long-term-care planning may be helpful in understanding the choices and taking a proactive approach.
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What Is Young Onset Dementia
Dementia is a degeneration of the brain that causes a progressive decline in peoples ability to think, reason, communicate and remember. Their personality, behaviour and mood can also be affected. Everyones experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
Dementia is described as young onset when symptoms develop before the age of 65, usually between 30 to 65 years of age. It is also referred to as early onset or working age dementia, but these terms can cause confusion. Early onset can be interpreted as the early stages of dementia and working age is now less defined as retirement age is more flexible.
As dementia is frequently, and wrongly, thought of as a condition that is just associated with old age, the early symptoms of young onset dementia are not always recognised and may be attributed to other causes including depression, stress, menopause, physical health problems and relationship issues. This can lead to a significant delay in getting an accurate diagnosis and access to appropriate support. This can have a negative impact on not just the person with dementias life but also the whole family.
The Stigma Of Young Onset Dementia
Because dementia is so strongly associated with older people, younger people can feel extra stigma and discrimination. A younger person may not be believed when they say they have been diagnosed with dementia. This attitude can add to a persons problems. For example, one woman with dementia reported being laughed at when she told others she had dementia . Another woman with dementia who talks to medical students about her condition as part of their training says, The first barrier you meet is that people dont believe that you can have dementia if you can still function. To others, these women seemed too young and too well to have dementia, and so they did not get the courtesy and respect they deserved. Later, a younger person may feel and look out of place in a care home where most other people are in their 80s and 90s.
Terry Pratchett talks about the stigma of a dementia diagnosis in a video from the Alzheimers Society.
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Symptoms Specific To Frontotemporal Dementia
Although Alzheimer’s disease is still the most common type of dementia in people under 65, a higher percentage of people in this age group may develop frontotemporal dementia than older people. Most cases are diagnosed in people aged 45-65.
Early symptoms of frontotemporal dementia may include:
- personality changes reduced sensitivity to others’ feelings, making people seem cold and unfeeling
- lack of social awareness making inappropriate jokes or showing a lack of tact, though some people may become very withdrawn and apathetic
- language problems difficulty finding the right words or understanding them
- becoming obsessive such as developing fads for unusual foods, overeating and drinking
Read more about frontotemporal dementia.
Planning For The Future
Planning early makes it easier for someone with younger onset dementia to manage their financial, legal and medical affairs now and in the future.
If you have been diagnosed with younger onset dementia, it is important to make important decisions while you still can and while you are legally competent to sign any documents.
Things to think about include:
- your living arrangements into the future
- who can have access to your financial accounts
- having joint signatures on all financial accounts
- arranging when and how you will access your finances
- talking to a financial adviser
- sorting out superannuation, health and income insurance
- writing or updating your will
If you have been diagnosed with dementia, its important to nominate a trusted person to manage your affairs in the future. You can do this through an Enduring Power of Attorney .
A financial EPA enables a nominated person to look after your financial affairs if you become unable to do so. A medical EPA covers only medical decisions. The laws regarding EPAs vary between states and territories, so it’s important to seek legal advice before the agreement is completed, or if you are moving interstate.
Some states also have medical guardianship . This allows someone to choose a person to make medical decisions for them. For more information on guardianship and administrators, visit the My Aged Care website.
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People Diagnosed Before Age 65 Present Unique Care Challenges
Fewer Canadians are diagnosed with dementia before age 65 than as seniors but their needs can be just as great.
Young-onset dementia is diagnosed before age 65 and tends to be unique in many ways. Early-onset forms of adult neurodegenerative conditions such as Alzheimers, vascular and frontotemporal dementia are some of the most common causes of dementia in those younger than 65. At the time of diagnosis, people with young-onset dementia may still be working, taking care of their children and parents, and meeting financial commitments . Of all Canadians with dementia, the proportion younger than 65 is approximately 3%. Among the 2,481 patients younger than 65 hospitalized with dementia, 54% were male.
People with young-onset dementia tend to stay longer in hospital, and a higher proportion of them have extremely long hospital stays. This may be due to difficulties in finding age-appropriate services for younger patients. In addition, people with young-onset dementia tend to be physically fit, so finding appropriate home supports may take time.
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What Is Early Onset Familial Alzheimer Disease
Definition: What Is eFAD?
Early onset familial Alzheimer disease is hereditary and marked by Alzheimer disease symptoms that appear at an unusually early age. Symptoms can start in a person’s thirties, forties, and fifties . Generally, if you are diagnosed with eFAD, then one of your parents will also have had it if he or she lived long enough, and your siblings and your children may have a 50-50 chance of having inherited it. Very rarely, eFAD can make a first-time appearance in a family through a new genetic mutation.
Genetics researchers studied eFAD families to discover the three known genes that cause familial AD: amyloid precursor protein , presenilin-1 , and presenilin-2 . Of these, PS1 mutations account for most eFAD, while APP and PS2 are more rare. Having a pathogenic mutation in one of these three genes virtually guarantees that one will develop early onset Alzheimer disease. Tests can determine which gene is at fauly . There are also cases of eFAD that cannot be linked to one of these three genes. There may be additional genes waiting to be discovered, if only researchers could connect with more eFAD families.
Prognosis: Is eFAD Different from LOAD?
How Common Is Early Onset Familial Alzheimer Disease?
For practical and research purposes, doctors and scientists need defined populations for study and the numbers change based on the definitions. The definition would seem to rest on two criteria:
|Early onset sporadic||Late-onset sporadic|
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How Is Alzheimers Disease Diagnosed
Talk to a doctor if you or a loved one is finding it increasingly difficult to perform day-to-day tasks, or if you or a loved one is experiencing increased memory loss. They may refer you to a doctor who specializes in AD.
Theyll conduct a medical exam and a neurological exam to aid in the diagnosis. They may also choose to complete an imaging test of your brain. They can only make a diagnosis after the medical evaluation is completed.
Theres no cure for AD at this time. The symptoms of AD can sometimes be treated with medications meant to help improve memory loss or decrease sleeping difficulties.
Research is still being done on possible alternative treatments.
Stage : Mild Dementia
At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:
- Difficulty remembering things about one’s personal history
- Difficulty recognizing faces and people
In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.
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Forgetfulness And Memory Loss
While forgetting where you placed your car keys may commonly occur with anyone at any age, and perhaps a bit more as you age, persistent forgetfulness or lapses in memory is typically a sign that something is wrong. For people with early onset Alzheimers, they may begin noticing abnormal and chronic lapses in memory as early as their 30s or 40s.
If youre missing where you are and how you got there, struggling to find the right words when conversing or consistently forgetting what your partner asked you to do, yet you feel as if youre too young to be experiencing these things, you may be developing some signs of early memory decline.
Dementias Caused By Neurodegeneration Of The Non
Various neurodegenerative diseases in presenile age, namely frontotemporal lobar degeneration, PSP, and corticobasal degeneration, cause widespread cerebral degeneration.
Frontotemporal lobar degenerations, such as Pick disease, frontotemporal lobar degeneration with motor neuron disease, frontotemporal dementia with parkinsonism linked to chromosome 17 , dementia lacking distinct histology , and dementia with neurofilament inclusions, cause characteristic clinical features of frontotemporal dementia.
The early clinical features of frontotemporal lobar degeneration are changes in personality and social behavior rather than impaired cognition. With progression of the disease, impairment of cognitive functions, including memory, becomes obvious and slowly increases in severity. Stereotypical speech, with prominent reduction of vocabulary, occurs in the advanced stage of the illness. Semantic dementia and progressive non-fluent aphasia are characteristic clinical symptoms of frontotemporal dementia.
Pathologically, Pick disease is characterized by massive neuronal loss and microvacuolation, which cause a circumscribed atrophy in the frontal and temporal lobes. Cytoplasmic argentophilic inclusions, namely Pick bodies consisting of 3-repeat tau-positive fibrils, are accepted as one of the diagnostic features of this disease.
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Reducing Your Risk Of Early Onset Dementia
A healthy lifestyle that includes a well-balanced diet and daily exercise promotes a healthy weight that then counters a bodys inflammatory response and reduces the risk of non-familial, early-onset dementia, he explains. Your brain is less likely to be subjected to negative changes that occur when the body is battling inflammation.
Other lifestyle changes may or may not prevent or even reduce someones risk, but having a foundation of both physical and mental health may mitigate the symptoms of the disease or slow the progression. These are some of the health-related conditions associated with Alzheimer’s disease and other dementias:
- Risks associated with cardiovascular disease like high blood pressure, diabetes, and high cholesterol also increase the risk of Alzheimers disease. The message here is to control cardiovascular disease to reduce your risk of many heart-related conditions along with Alzheimers disease.
- Physical exercise increases blood oxygen flow to the brain and improves mood.
- Heart-healthy eating may protect the brain. This includes limiting the intake of sugar and saturated fats and making sure to eat plenty of fruits, vegetables, and whole grains. Avoid processed foods.
- Several studies show that maintaining social connections and engaging in stimulating activities may lower the risk of cognitive decline.
Stage : Moderate Dementia
Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.
While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.
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Problem Solving Or Planning Difficulties
The person may find that they have difficulty following directions, solving problems, and focusing. For example, they may find it difficult to:
- follow a recipe
- follow directions on a product
- keeping track of monthly bills or expenses
Some people often have problems like these, but if they start to happen when they did not happen before, it could indicate early onset Alzheimers disease.