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.
Limitations Of Our Study
Whilst our study was community-based and included an age and gender-matched control group, there are some limitations. First, in the recruitment process, the control group came from the day hospital, orthogeriatric rehabilitation unit and older peoples clubs which may not be a true representation of the general population. To address this, further statistical analysis was performed using NI age-and-sex specific mortality data obtained from the RG Office. Second, after initial assessment no clinical follow-up of control subjects was performed. Thus, incident cases of AD were missedAD was recorded as an immediate cause of death for one control subject and mentioned in another MCCD. One study permitted that control subjects could become patients at a later date if criteria were met and would be analysed as a patient at the final MCCD assessment. Finally, although we can speculate over the accuracy of MCCDs in our cohort by comparison to previous reports, ultimately it requires an autopsy study to truly assess accuracy of death certification. Such a study may prove challenging to conduct. However, our data for all causes of death in AD are comparable to those of a tertiary referral memory clinic cohort from Scotland.
What Is The Most Common Cause Of Death In Alzheimers
As peoples muscles weaken, and they lose their appetite and ability to feed themselves, many of the bodys organs begin to falter. These circumstances then create a domino effect of other complications.
Many people will die from other causes, such as heart failure, stroke, accidents and all of the other things that were at risk of dying from when we get older, Sampson said.
Don’t Miss: Dementia Awareness Color
Dying From Dementia With Late
The death of your loved one can be a hard concept to wrap your head around and accept. But knowing what to expect can help you when your loved one has late-stage dementia. It might help to understand what’s coming in the future so you can prepare emotionally and practically.
This article explains how dementia progresses and what happens during late-stage dementia.
Whats The Best Way To Care For Someone Whos In Late Stages Of Dementia
The ideal time to plan for late stage care is when the person with dementia can still participate in the decision-making process. However, even if the person with dementia and caregivers communicated clearly while the disease was in early stages, things can change. Symptoms can progress more or less quickly and resources may dwindle.
Here are a few things to keep in mind if you are caring for someone in late stage dementia:
Read Also: Does Prevagen Help Dementia
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.
What Happens To Your Brain With Alzheimers Disease
Alzheimers disease occurs when the behavior of brain chemicals suddenly changes. Specifically, brain proteins pile up unnaturally and cause other toxic reactions to take place.
As a result, brain cells stop working, lose their connection to each other, and die. The damage begins in the part of the brain responsible for memory. Over time, however, it spreads to other parts, such as the area that controls speech.
In the final stages of the condition, the recurrent loss of neurons causes the brain to shrink.
Symptoms of Alzheimers disease may not appear until this damage reaches an advanced stage.
Don’t Miss: Smelling Farts Dementia
How Does Alzheimers Cause Death
Alzheimers is considered to be the sixth biggest killer, and although it is rarely the direct cause of death, the disease is the underlying cause of death in a large number of people aged 65 and above. But how does Alzheimers cause death and is it always fatal?
Alzheimers disease causes death in a number of different ways. These days, with the help of modern medications, many patients are able to enjoy a much greater quality of life and live for far longer than they might have done a hundred years ago and some patients can live for many years once Alzheimers disease has been diagnosed. However, there is no known cure for Alzheimers disease and death is usually as a result of complications of the disease.
How Does Alzheimers Kill
Alzheimer’s disease is a degenerative disease of the brain, resulting in memory loss, cognitive decline, and personality changes. Alzheimers disease is the most common cause of dementia . People with Alzheimer’s disease first develop memory loss. As the disease progresses, memory loss worsens and problems with thinking, decision making, reasoning, language, or perception develop.
In the late stages of Alzheimer’s, individuals lose their ability to communicate or respond to the environment and require constant care. The brain damage leads to the failure of the bodys organs and functions, including the lungs, heart, and digestion, which can eventually kill the individual. Alzheimer’s is a disease with no cure, but there are ways to stop or slow its progression with medications and other therapies. These can treat symptoms and improve the quality of life.
Alzheimers disease can be either of the following:
- Sporadic Alzheimer’s disease is the most common form of Alzheimer’s and occurs after 65 years of age. The affected person does not have any history of the disease in their family members.
- Familial Alzheimers disease is a rare genetic condition. A person with inherited mutated genes may develop Alzheimer’s disease when they are of age 40-50 years .
Also Check: Alzheimer Ribbon
Medications To Treat The Underlying Alzheimer’s Disease Process
Aducanumab is the first disease-modifying therapy approved by the FDA to treat Alzheimers disease. The medication helps to reduce amyloid deposits in the brain and may help slow the progression of Alzheimers, although it has not yet been shown to affect clinical outcomes such as progression of cognitive decline or dementia. A doctor or specialist will likely perform tests, such as a PET scan or analysis of cerebrospinal fluid, to look for evidence of amyloid plaques and help decide if the treatment is right for the patient.
Aducanumab was approved through the FDAs Accelerated Approval Program. This process requires an additional study after approval to confirm the anticipated clinical benefit. If the follow-up trial fails to verify clinical benefit, the FDA may withdraw approval of the drug. Results of the phase 4 clinical trial for aducanumab are expected to be available by early 2030.
Several other disease-modifying medications are being tested in people with mild cognitive impairment or early Alzheimers as potential treatments.
How Do You Know When An Alzheimer’s Patient Is Dying
In the final stages of Alzheimers disease, neuronal damage and muscle weakness cause patients to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, control bladder or bowel movements, or feed themselves without significant assistance and careful supervision.
Signs that a patient with Alzheimer’s disease is close to the end of their life include:
- Inability to speak
- Inability to eat or drink because they cant swallow
- Inability to move from a bed to a chair or change their position
- Bedsores or pressure ulcers caused by sitting or lying in the same position for too long
- Unprovoked seizures
- Cold hands, feet, arms, and legs
- Sleeping for longer periods of time
- Breathing changes such as shallow breaths or periods without breathing for a few seconds
The final stages of Alzheimer’s disease can be emotionally and physically challenging, not only for patients, but also for their family members and caregivers.
You May Like: Did Reagan Have Alzheimers
Health Environmental And Lifestyle Factors That May Contribute To Alzheimer’s Disease
Research suggests that a host of factors beyond genetics may play a role in the development and course of Alzheimer’s disease. There is a great deal of interest, for example, in the relationship between cognitive decline and vascular conditions such as heart disease, stroke, and high blood pressure, as well as metabolic conditions such as diabetes and obesity. Ongoing research will help us understand whether and how reducing risk factors for these conditions may also reduce the risk of Alzheimer’s.
A nutritious diet, physical activity, social engagement, sleep, and mentally stimulating pursuits have all been associated with helping people stay healthy as they age. These factors might also help reduce the risk of cognitive decline and Alzheimer’s disease. Clinical trials are testing some of these possibilities.
Early-life factors may also play a role. For example, studies have linked higher levels of education with a decreased risk of dementia. There are also differences in dementia risk among racial groups and sexesall of which are being studied to better understand the causes of Alzheimers disease and to develop effective treatments and preventions for all people.
Racial And Ethnic Differences In The Prevalence Of Alzheimer’s And Other Dementias
Although there are more non-Hispanic whites living with Alzheimer’s and other dementias than any other racial or ethnic group in the United States , older black/African Americans and Hispanics/Latinos are disproportionately more likely than older whites to have Alzheimer’s or other dementias., , – Most studies indicate that older black/African Americans are about twice as likely to have Alzheimer’s or other dementias as older whites., , Some studies indicate older Hispanics/Latinos are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites.,, , However, Hispanics/Latinos comprise a very diverse group in terms of cultural history, genetic ancestry and health profiles, and there is evidence that prevalence may differ from one specific Hispanic/Latino ethnic group to another .,
There is evidence that missed diagnoses of Alzheimer’s and other dementias are more common among older black/African Americans and Hispanics/Latinos than among older whites., Based on data for Medicare beneficiaries age 65 and older, it has been estimated that Alzheimer’s or another dementia had been diagnosed in 10.3% of whites, 12.2% of Hispanics/Latinos and 13.8% of black/African Americans. Although rates of diagnosis were higher among black/African Americans than among whites, according to prevalence studies that detect all people who have dementia irrespective of their use of the health care system, the rates should be even higher for black/African Americans.
Read Also: Is Senility The Same As Dementia
Trends In Dementia Caregiving
There is some indication that families are now better at managing the care they provide to relatives with dementia than in the past. From 1999 to 2015, dementia caregivers were significantly less likely to report physical difficulties and financial difficulties related to care provision. In addition, use of respite care by dementia caregivers increased substantially . However, as noted earlier, more work is needed to ensure that interventions for dementia caregivers are available and accessible to those who need them. A 2016 study of the Older Americans Act’s National Family Caregiver Support Program found that over half of Area Agencies on Aging did not offer evidence-based family caregiver interventions.
What Symptoms Signal Late Stage Dementia
Dementia disorders are progressive, meaning they worsen with time. How fast each person changes has a lot to do with their individual health and the cause of their condition.
In the early stages of some progressive disorders, symptoms may vary. For example, people with Lewy body dementia may have more problems with movement and hallucinations than someone with Alzheimers, says the Alzheimers Association.
As the illnesses progress, they share more and more of the same kinds of symptoms. You can tell someone is in a later stage of a progressive brain disorder if they:
- have lost the ability to walk, eat, swallow, sit up, or move around
- need a wheelchair or stay in bed most of the time
Recommended Reading: Does Medicare Cover Respite Care For Alzheimer’s
How To Test For Dementia
There is no single test that can determine a person is suffering from dementia. The doctor can diagnose different types of dementia such as Alzheimers based on their medical history.
This has to be done very carefully. In addition, the doctor may conduct laboratory tests, physical examinations, and changes in the way the patient thinks.
When all things are considered carefully, a doctor can be able to determine that a person is actually suffering from dementia with certainty. Determining the type of dementia can be hard, especially due to the fact that brain changes and symptoms that are associated with the different types of dementias sometimes overlap.
It is normal for the doctor to give a diagnosis of dementia without really specifying the type. In such a case, it is important for the patient to visit a specialist in this area like a psychologist or neurologist for a more specific diagnosis.
Differences Between Women And Men In The Prevalence And Risk Of Alzheimer’s And Other Dementias
More women than men have Alzheimer’s or other dementias. Almost two-thirds of Americans with Alzheimer’s are women., Of the 5.8 million people age 65 and older with Alzheimer’s in the United States, 3.6 million are women and 2.2 million are men., Based on estimates from ADAMS, among people age 71 and older, 16% of women have Alzheimer’s or other dementias compared with 11% of men.
The prevailing reason that has been stated for the higher prevalence of Alzheimer’s and other dementias in women is that women live longer than men on average, and older age is the greatest risk factor for Alzheimer’s.- But when it comes to differences in the actual risk of developing Alzheimer’s or other dementias for men and women of the same age, findings have been mixed. Most studies of incidence in the United States have found no significant difference between men and women in the proportion who develop Alzheimer’s or other dementias at any given age., , – However, some European studies have reported a higher incidence among women at older ages,, and one study from the United Kingdom reported higher incidence for men. Differences in the risk of dementia between men and women may therefore depend on age and/or geographic region.,
Cause Of Death In Alzheimers Disease: A Cohort Study
1Present address: Western Health and Social Care Trust, Altnagelvin Hospital, Glenshane Road, Londonderry BT47 6SB, UK
2Present address: Western Health and Social Care Trust, South West Acute Hospital, 124 Irvinestown Road, Enniskillen, Co., Fermanagh BT74 6DN, UK
QJM: An International Journal of Medicine
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.