Icipating In Alzheimer’s 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. To learn more about clinical trials, watch this video from NIH’s National Library of Medicine.
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.
Its A Long Goodbye By Unknown Author
There is lamentation following the passage of time with the failure of ones memory. And while its unclear whether the author is a partner or child, what is clear is that their relationship had been long.
Even more so, no matter the length of the past relationshipits the goodbye that occurs over such a long space of time that is heartbreaking.
What Does This Mean
While there is currently no cure for Alzheimers disease, people should see a doctor if they experience symptoms such as memory loss affecting their daily life, difficulties with problem solving, or misplacing objects. Early diagnosis is important to allow patients and their families to begin planning for medical and caregiving needs at all stages. These findings highlight the escalating demand for in-home care and the need to prepare and provide support to caregivers.
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Deaths Caused By Alzheimers Disease And Other Dementias Fall By 5%
6,046 deaths were caused by Alzheimers disease and other dementias in Scotland in 2021, a decrease of 5% on 2020, according to new figures from National Records of Scotland.
Two thirds of those who died due to Alzheimers disease and other dementias were females – there were 4,060 female deaths and 1,986 male deaths.
While this years mortality rate is a statistically significant decrease from 125 deaths per 100,000 in 2020, the current rate of death is more than twice as high as it was in 2000 .
Deaths caused by Alzheimers disease and other dementias were 1.3 times as likely to occur in the most deprived areas of Scotland compared to the least deprived areas.
Deprivation has less impact on deaths from Alzheimers disease and other dementias than on deaths from all causes. Other causes of death are 1.9 more likely to occur in the most deprived areas of Scotland compared to the least deprived areas.
After adjusting for age, the mortality rate for deaths caused by Alzheimers disease and other dementias was highest in the Lanarkshire, Greater Glasgow and Clyde, and Forth Valley NHS board areas.
Where Alzheimers disease and other dementias are mentioned on the death certificate, but are not necessarily the underlying cause, there was 10,626 deaths in 2021, with a rate of mortality of 204 per 100,000 people . In 2020, deaths in this category peaked at 241 deaths per 100,000. This is most likely due the effect of deaths caused by COVID-19 during this year.
Background
What Is The Burden Of Alzheimers Disease In The United States
- Alzheimers disease is one of the top 10 leading causes of death in the United States.2
- The 6th leading cause of death among US adults.
- The 5th leading cause of death among adults aged 65 years or older.3
In 2020, an estimated 5.8 million Americans aged 65 years or older had Alzheimers disease.1 This number is projected to nearly triple to 14 million people by 2060.1
In 2010, the costs of treating Alzheimers disease were projected to fall between $159 and $215 billion.4 By 2040, these costs are projected to jump to between $379 and more than $500 billion annually.4
Death rates for Alzheimers disease are increasing, unlike heart disease and cancer death rates that are on the decline.5 Dementia, including Alzheimers disease, has been shown to be under-reported in death certificates and therefore the proportion of older people who die from Alzheimers may be considerably higher.6
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Support For Families And Alzheimer’s Disease Caregivers
Caring for a person with Alzheimers can have significant physical, emotional, and financial costs. The demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be difficult. NIA supports efforts to evaluate programs, strategies, approaches, and other research to improve the quality of care and life for those living with dementia and their caregivers.
Becoming well-informed about the disease is one important long-term strategy. Programs that teach families about the various stages of Alzheimers and about ways to deal with difficult behaviors and other caregiving challenges can help.
Good coping skills, a strong support network, and respite care are other things that may help caregivers handle the stress of caring for a loved one with Alzheimers. For example, staying physically active provides physical and emotional benefits.
Some caregivers have found that joining a support group is a critical lifeline. These support groups enable caregivers to find respite, express concerns, share experiences, get tips, and receive emotional comfort. Many organizations sponsor in-person and online support groups, including groups for people with early-stage Alzheimers and their families.
Read about this topic in Spanish. Lea sobre este tema en español.
Common Types Of Dementia
Most people who have dementia experience problems with cognitive skills, depression, indifference, and a lack of interest in doing things.
People with Lewy body dementia and Alzheimer’s disease may have similar early symptoms. Memory loss is common in both conditions, for example. Lewy body dementia also commonly causes fluctuations in arousal, hallucinations, sleep problems, and difficulty walking.
In contrast, people in the early stages of frontotemporal dementia usually don’t have memory problems. Instead, they might have obvious changes in personality and behavior.
Vascular dementia, which occurs as a result of having many strokes throughout the brain, can cause problems understanding concepts, emotional and personality changes, and memory problems. This type of dementia may accompany other types, making the decline more severe.
And chronic traumatic encephalopathy , which occurs after repeated head trauma, often begins to cause symptoms years after the traumatic brain injuries, with a significant progression of mood changes, personality changes, and a decline in memory and cognitive skills.
With Lewy body dementia, frontotemporal dementia, vascular dementia, and CTE, the memory problems may respond to cues/reminders, while in Alzheimer’s there is often a forgetting of recent events altogether.
In the final stage of all types of dementia, a person goes through a major decline in everyday functioning.
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Deaths From Alzheimers Disease
Alzheimers disease, a fatal form of dementia, is a public health problem.
Alzheimers disease-related deaths have increased over the past 16 years in every race, sex, and ethnicity category, and will most likely continue to increase as the population continues to age. More persons with Alzheimers disease are dying at home, and this means more caregivers are needed to care in the final stages of Alzheimers disease is very great.
Supporting Dementia Caregivers At The End Of Life
Caring for people with Alzheimers or another dementia at the end of life can be demanding and stressful for the family caregiver. Depression and fatigue are common problems for caregivers because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.
It is not uncommon for those who took care of a person with advanced dementia to feel a sense of relief when death happens. It is important to realize such feelings are normal. Hospice care experts can provide support to family caregivers near the end of life as well as help with their grief.
If you are a caregiver, ask for help when you need it and learn about respite care.
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Do Not Ask Me To Remember By Owen Darnell
Darnells poem evokes the tragedy that often happens to patients with memory loss. Unfortunately, because they cant remember most things, this alters their personality. And, sometimes, people arent so kind.
Do not lose your patience with me,Do not scold or curse or cry.I cant help the way Im acting,Cant be different though I try.
How Many Americans Have Alzheimers Disease
Estimates vary, but experts suggest that more than 6 million Americans age 65 and older may have Alzheimers. Many more under age 65 also have the disease. Unless Alzheimer’s can be effectively treated or prevented, the number of people with it will increase significantly if current population trends continue. This is because increasing age is the most important known risk factor for Alzheimers disease.
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Being There For A Person With Dementia At The End Of Life
As dementia progresses, caregivers may find it hard to provide emotional or spiritual comfort to a person who has severe memory loss. However, even in advanced stages of dementia, a person may benefit from such connections.
Sensory connections targeting someones senses, including hearing, touch, or sight may also bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen agitation. Just being present can be calming to the person.
Palliative or hospice care teams may be helpful in suggesting ways for people with dementia and their families to connect at the end of life. They also may be able to help identify when someone with dementia is in the last days or weeks of life.
Signs of the final stages of dementia include some of the following:
- Being unable to move around on ones own
- Being unable to speak or make oneself understood
- Eating problems such as difficulty swallowing
Though palliative and hospice care experts have unique experience with what happens at the end of life and may be able to give a sense of timing, its hard to predict exactly how much time a person has left.
Impact On Families And Carers
In 2019, informal carers spent on average 5 hours per day providing care for people living with dementia. This can be overwhelming . Physical, emotional and financial pressures can cause great stress tofamilies and carers, and support is required from the health, social, financial and legal systems. Fifty percent of the global cost of dementia is attributed to informal care.
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Causes Of Death In People With Alzheimer’s Disease
The Alzheimer’s Association notes that Alzheimer’s disease is the sixth leading cause of death in the United States. It also points out that out of the top 10 causes of death, it’s the only one without an effective treatment or cure.
The Centers for Disease Control and Prevention also highlights Alzheimer’s as a significant cause of death, pointing out that between 1999 and 2014, deaths attributed to Alzheimer’s rose by 55%.
One of the challenges in tracking deaths from Alzheimer’s is that Alzheimer’s disease is not always identified as the cause of death on a death certificate. Sometimes, the conditions that develop from Alzheimer’s are listed instead as primary on the death certificate. In other cases, Alzheimer’s may have never been officially diagnosed. These challenges in tracking Alzheimer’s deaths are demonstrated in one study that found that deaths from Alzheimer’s in people over the age of 75 may be as high as six times the count officially recorded.
Average life expectancy for people living with Alzheimer’s is four to seven years after diagnosis, although some people may live as much as 20 years or more.
Being Patient: Dr Sampson Do Researchers Know How Much Someone Whos Dying From Alzheimers Can Understand When Loved Ones Speak To Them
Dr. Liz Sampson: We know very little about where people are. You can get very hung up thinking about medical things, but at a very basic level, even someone with advanced dementia is aware of the atmosphere around them, so if people are distressed around them, the person will pick up on that. Its about thinking holistically, so they may preserve certain senses.
Their sense of smell may be very well preserved, which is why using aromatherapydespite that theres no real evidence that it helps dementia patientsis comforting. Its helpful being surrounded by nice smells or music, which reach the inner parts of our brain and trigger basic emotional responses in us. Theres good reason to think that the sound of a familiar voice or holding someones hand is going to register with them on some level. For caregivers, it will also help them with their grief.
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What Happens In End
In the early stages of dementia, people have memory problems, and in moderate stages, they might have difficulty with relating to other people, relationships, and perhaps their behavior and distress becomes an issue, Liz Sampson, an expert in end-of-life-care and a professor at University College London, told Being Patient. Then as the brain cells die off more quickly, more fundamental parts of the brain become affected the parts of the brain that coordinate movement.
In these later stages, many other physical challenges arise as cells in their brain gradually die off. These dying brain cells affect everything from memory and awareness, to speech and language, to mobility, to the ability to swallow food and water.
As these changes progress, it becomes impossible for a person to live independently, and eventually, many people with Alzheimers die from complications caused by the disease.
What Is Known About Reducing Your Risk Of Alzheimers Disease
The science on risk reduction is quickly evolving, and major breakthroughs are within reach. For example, there is growing evidence that people who adopt healthy lifestyle habits like regular exercise and blood pressure management can lower their risk of dementia. There is growing scientific evidence that healthy behaviors, which have been shown to prevent cancer, diabetes, and heart disease, may also reduce risk for subjective cognitive decline. To learn more about the current state of evidence on dementia risk factors and the implications for public health, please read the following summaries on Cardiovascular Health, Exercise, Diabetes and Obesity, Traumatic Brain Injury , Tobacco and Alcohol, Diet and Nutrition, Sleep, Sensory Impairment, and Social Engagement or the Compiled Report .
Aging
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Being Patient: Jasja Did You Talk To Your Mom About What She Wanted For End
Jasja De Smedt Kotterman: Luckily, my mother had always been specific throughout her life about how she wanted to die. It was actually very easy because she told us how she wanted to be buried, and we knew this way before she was sick. It was something that was always discussed with her in reference to how her parents had died and how she wanted us to treat her when she died. So for us, that really, really helped, because we knew what she wanted. Specifically, when my mother first got sick, my father decided not to share her disease with her. For a large part of the time, my mother was oblivious to the fact that she was sick. Even when she was being tested by the doctors, my father would come out and say, You did really well in the test and the doctors said youre fine. When we put her into a home, he even said, Youre just going in for testing. The doctors just want you to stay for a couple of weeks. They want to monitor you, but then youre coming home.
Those Hands That Once Held Mine By Dean Harrison
Harrison’s poem is fascinating because while it’s usually feet that take a person on a journey, here we follow a son’s journey with his mother through her hands’ support.
He turns from being cared for to eventually being the caregiver. Who knew that holding someone’s hands could be such a declaration of love?
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How Long Will A Person With Dementia Live For
Dementia is a life-limiting condition, but it is very difficult to know how long someone with dementia will live for. This depends on many factors.
If the person also has another life-limiting condition , it may be clearer how long they may live for and how they will die.
A person may die from another condition at any stage of having dementia. Because of this, they may die before their dementia symptoms become very advanced.
A person in the later stages of dementia may get worse slowly over many months. During this time they will usually:
- become more frail
- have more frequent falls or infections
- have problems eating, drinking and swallowing
- be more likely to need urgent medical care
- become less mobile
- talk less often.
A person in the later stages of dementia is likely to have a weak immune system. This means they have a higher risk of getting infections, which in some cases can last for a long time. One of the most common causes of death for people with dementia is pneumonia caused by an infection.
A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months. This uncertainty makes it very difficult to plan and put things in place for the end of someones life.