Data Collection And Analysis
The semi-structured interview guide was developed by the PI and revised in response to suggestions from LBDA staff, two experts guiding the LBDA, and three caregivers for individuals who died from DLB. The guide included 11 open-ended questions regarding EOL experiences of the participant and his or her loved one with DLB . The PI, a physician specializing in DLB, conducted all the interviews. She had no prior relationship with participants. A professional service transcribed interviews verbatim, therefore member checking was not employed. Participants had the opportunity to receive study results when available.
Place Of Care In The Last Phase Of Life
In developing palliative care for people with advanced dementia, it is important to consider circumstances of care such as place of care or where the person dies. The majority of people with early stage dementia live at home with family members caring for them. Approximately one third of people with dementia are cared for in nursing homes . A survey identified dementia in 68% of nursing home residents with only slightly more than half having recorded diagnosis and with more than half suffering from advanced dementia . People in the advanced stages of dementia spend most of their time in nursing homes . The likelihood of nursing home admission increases with age and severity of behavioural symptoms high burden of family carers is also associated with nursing home admission . People with migration background are less often cared for in nursing homes .
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:
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Possible Causes Of Death
With some diseases, you end up dying not from the disease itself, but from a complication related to the disease. This is true for dementia. Many people with dementia ultimately die from a complication of the disease. These include:
- Pneumonia: This is one of the biggest reasons why a person with dementia dies. They ultimately develop inflamed, infected lungs, which may be filled with fluid.
- Falls: Falling can be deadly for a senior citizen. Dementia can affect your balance and your ability to walk, so it’s not uncommon to see people with dementia struggling to stand up.
- Choking: Some dementia patients develop a form of pneumonia where food goes down the wrong tube. During the late stages of dementia, they may have trouble swallowing.
- Suicide: During the early stages of dementia, especially in the time immediately following a diagnosis, there may be an increased risk of suicide. Know that depression is an early sign of dementia.
- Bedsores: Prolonged pressure on a certain part of your body can create sores. In late-stage dementia, patients can find it hard to move or get out of bed, leading to bedsores.
- Stroke: This is one of the leading causes of death in the U.S. In some cases, dementia can make the brain bleed, which increases the risk of stroke.
- Heart Attack: Having dementia may also increase the risk of having a heart attack. As with a stroke, the patient’s heart needs to be monitored to prevent a heart attack before it happens.
How Long Until Death?
What Can I Do?
Signs Of Dying In The Elderly With Dementia
Dementia is a general term for a chronic or persistent decline in mental processes including memory loss, impaired reasoning, and personality changes. Alzheimers disease is the most common form of dementia, accounting for 60-80% of all cases of dementia. It is also the 6th leading cause of death in the United States, and over 5 million Americans are currently living with Alzheimers disease.
Alzheimers disease and most progressive dementias do not have a cure. While the disease inevitably worsens over time, that timeline can vary greatly from one patient to the next.
Caring for a loved one can be challenging and stressful, as the individuals personality changes and cognitive function declines. They may even stop recognizing their nearest and dearest friends and relatives. As dementia progresses, the individual will require more and more care. As a family caregiver, its important to be able to recognize the signs of dying in elderly with dementia. Hospice can help by offering care wherever the individual resides, providing physical, emotional and spiritual care to the patient and support their family.
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Active Management Of Alzheimer’s Dementia
- Appropriate use of available treatment options.
- Effective management of coexisting conditions.
- Providing family caregivers with effective training in managing the day-to-day life of the care recipient.
- Coordination of care among physicians, other health care professionals and lay caregivers.
- Participation in activities that are meaningful to the individual with dementia and bring purpose to his or her life.
- Having opportunities to connect with others living with dementia support groups and supportive services are examples of such opportunities.
- Becoming educated about the disease.
- Planning for the future.
To learn more about Alzheimer’s disease, as well as practical information for living with Alzheimer’s and being a caregiver, visit alz.org.
Make Your Loved One Comfortable With Home Dementia Care In Phoenix Az
Do you have a family member or loved one suffering from dementia? Call and talk to one of our staff at Devoted Guardians. We are one of Arizonas largest home care providers with personnel trained in dementia care. We offer daily 24-hour living assistance, including nighttime watch, and personal care.
Devoted Guardians’ Response to COVID-19
Devoted Guardians is actively monitoring the progression of the coronavirus, COVID-19, to ensure that we have the most accurate and latest information on the threat of the virus. As you know, this situation continues to develop rapidly as new cases are identified in our communities and our protocols will be adjusted as needed.
While most cases of COVID-19 are mild, causing only fever and cough, a very small percentage of cases become severe and may progress particularly in the elderly and people with underlying medical conditions. Because this is the primary population that Devoted Guardians serves, we understand your concerns and want to share with you how our organization is responding to the threat of COVID-19.
We are following updates and procedures from the Centers for Disease Control State Department of Health, local and county authorities, the Home Care Association of America and other agencies and resources. Our response and plans may adjust according to the recommendations from these organizations.
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What Are Some Complications
At some point, virtually all Alzheimerâs patients will have problems eating. They may stop eating entirely. This straightforwardly leads to malnutrition, weakness, weight loss, and starvation.
As mentioned, above, many Alzheimerâs-afflicted individuals lose the ability to walk. This general immobility leaves the person variously bedridden or wheelchair bound. Normal-functioning people may be at greater risk for health problems when they lead a sedentary lifestyle. But to be more or less completely stationary is much worse. Being motionless in this way can lead to bed sores and blot clots .
In advanced stages, the brain degenerates to the point where it is unable to properly regulate the body. This irregularity can precipitate all sorts of problems, including weakened immunity.
âAspirationâ occurs when a person accidentally inhales bits of food or drops of water. These then end up in the lungs. Without the ability to expel these foreign materials by coughing or sneezing, the individual is at great risk for infections and pneumonia.
Moreover, immune-compromised persons are more susceptible to infections and can develop serious conditions like sepsis.
Dementia Stages Before Death
At diagnosis, most people are in either the early- or mid-stage of dementia. People with early stage dementia may be a bit forgetful, but they can still function in everyday life. They live independently many still work.
In mid-stage dementia, memory and thinking problems become more obvious. Other people notice that the affected individual is no longer operating at peak capacity. Symptoms become more pronounced as this stage progresses. Affected individuals may forget that they just ate. They may wander or get lost while walking a once-familiar route. Their sleep habits may change. Its not uncommon for people with mid-stage dementia to sleep during the day and be up most of the night.
Eventually, dementia progresses to the point where individuals can no longer control bowel and bladder function. This loss of control is directly Related to the damage occurring in the brain the cells that normally control these functions die. And as more and more cells die, symptoms worsen. In late-stage , individuals may lose the ability to walk and speak. Self-feeding becomes impossible, and as the disease progresses, many people have a hard time swallowing food or drink.
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Where Would Patients With Dementia Prefer To Die
Only two small studies were identified that investigated dementia patients’ preferences for place of death: both studies were limited in the data provided. One did not report preferences for place of death per se, only that those enrolled with the home hospice for dementia were more likely to die at their location of choice and less likely to die in hospital . The second, a small study of group homes for people with dementia in Japan reported that 14 residents preferred to die in group home , 15 preferred home and none preferred hospital . The authors state that only six patients had died at their preferred place of death, although the authors do not report where these deaths occurred.
And As A Result Healthcare Resources May Need Realignment
byJudy George, Senior Staff Writer, MedPage Today August 24, 2020
Vital statistics data may significantly underestimate mortality associated with dementia, a longitudinal analysis suggested.
The percentage of deaths attributable to dementia was 13.6% — 2.7 times the percentage recorded on their death certificates — in a study of older adults followed for up to 10 years, reported Andrew Stokes, PhD, of Boston University School of Public Health, and co-authors in JAMA Neurology.
“There are unique reasons why national mortality statistics might underestimate the mortality burden of Alzheimer’s and related dementias,” Stokes said.
“First, there’s no routine screening in primary care, so high rates of undiagnosed dementia are high,” he told MedPage Today. There’s also stigma attached to dementia, which can affect coding on the death certificate, he noted.
In addition, many older adults have multiple comorbidities, Stokes pointed out. “It can be easy to attribute death to a more proximate cause, which could be cardiovascular disease or pneumonia or sepsis or other causes,” he said.
To conduct their analysis, Stokes and co-researchers followed a sample of participants from the Health and Retirement Study , a nationally representative longitudinal survey of U.S. older adults, from baseline cognitive assessment in 2000 through 2009, linking HRS data with National Death Index records.
This work was supported by a National Institute on Aging grant.
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Use And Costs Of Long
An estimated 70% of older adults with Alzheimer’s or other dementias live in the community, compared with 98% of older adults without Alzheimer’s or other dementias. Of those with dementia who live in the community, 74% live with someone and the remaining 26% live alone. As their disease progresses, people with Alzheimer’s or other dementias generally receive more care from family members and other unpaid caregivers. Many people with dementia also receive paid services at home in adult day centers, assisted living facilities or nursing homes or in more than one of these settings at different times during the often long course of the disease. Medicaid is the only public program that covers the long nursing home stays that most people with dementia require in the late stages of their illnesses.
6.3.1 Use of long-term care services by setting
Long-term care services provided at home and in the community
Transitions between care settings
6.3.2 Costs of long-term care services
Affordability of long-term care services
Long-term care insurance
How Might Dementia Affect People Towards The End Of Life
Dementia is progressive, which means it gets worse over time. In the last year of life, its likely to have a big impact on the persons abilities including memory, communication and everyday activities. The speed at which someone will get worse will depend on the type of dementia they have and who they are as an individual.
The symptoms of later stage dementia include the following:
A person with later stage dementia often deteriorates slowly over many months. They gradually become more frail, and will need more help with everyday activities such as eating, dressing, washing and using the toilet. People may experience weight loss, as swallowing and chewing become more difficult.
A person with later-stage dementia may also have symptoms that suggest they are close to death, but continue to live with these symptoms for many months. This can make it difficult for the person and their family to plan for the end of life. It also makes it difficult for those supporting them professionally.
For more information on supporting someone with later stage dementia see Alzheimers Society factsheet, The later stages of dementia .
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Alzheimers Disease And Other Dementias Are The Leading Cause Of Death In The Uk
Mortality rates for Alzheimers disease and other dementias have increased over the last decade. In contrast, the other top four leading causes of death in 2017 ischaemic heart diseases, cerebrovascular diseases, chronic lower respiratory diseases and lung cancer have all seen falling mortality rates in the last 15 years.
Page last reviewed: 07/07/2021
Dementia is the leading cause of death in the UK. The graph below shows the increase in the proportion of deaths due to Alzheimers disease and other forms of dementia over the last several years, compared to several other leading causes of death.
How Does A Person Die From Dementia
Can dementia kill? Alzheimer’s disease doesnt just make you forgetful. Its a serious, progressive condition which is, eventually, terminal. Alzheimers and other forms of dementia have now overtaken heart disease to become the leading cause of death in England and Wales.
The brain is responsible for more than thought, memory and understanding. It controls our bodily systems including breathing, circulation and digestion. Alzheimers kills cells in the brain. This damage initially leads to problems remembering things and communicating effectively. However, with time the brain damage affects the whole body, leading to death. This can be from a number of causes:
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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.
Complex Interventions In Advanced Dementia
As people with advanced dementia suffer complex symptoms and still have numerous and complex physical, psychosocial and spiritual needs they are in need of multidisciplinary health care. By comparison with early stages of the disease there is less knowledge about needs in advanced dementia . Physical needs are related to adequate symptom relief and basic care needs. It is complex to meet the numerous and differentiated psychosocial needs comparable to people in moderate state of dementia, e.g., need of enhancing personhood, communicating and being in contact with others, participating in everyday life or feeling save and familiar . Unmet social needs for activity contributed to discomfort and behavioral symptoms . Needs being important in mild or moderate stage of the disease, e.g., financial needs and cognitive strategies for coping with disease are less direct needs at least for the people with advanced dementia themselves.
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Support For People With Dementia And Carers
UCL covid-19 decision aid – a tool to support carers of people living with dementia to make difficult decisions during covid-19
Alzheimers Society end of life care information for patients and families
Alzheimers Society information and fact sheets on all aspects of dementia including what is dementia, types of dementia and living well with dementia
Alzheimer Scotland specialist services for patients and carers
Dementia UK expert one-on-one advice and support to families living with dementia via Admiral Nurses
Is Alzheimers A Terminal Illness
This question has a fair amount of subtlety. I have treated it at greater length HERE. But, suffice it to say that there are broad and narrow conceptions for what a âterminal illnessâ is.
On the broad conception, a terminal illness is merely one that reduces your life expectancy and that you will you will have at the time of your death. Alzheimerâs surely fits this general description.
On the narrow definition, a terminal illness is one that you are expected to die from very soon â maybe within twelve or twenty-four months. A person recently diagnosed with mild-cognitive impairment or early-stage Alzheimerâs may have eight to ten years to live. So, on this narrow definition, âAlzheimerâsâ â by itself â may not be a terminal illness. However, we could say that late-stage Alzheimerâs could plausibly be construed as a terminal illness. Because, by the time a person enters Alzheimerâs advanced, end, or late stage, it may well be that their life expectancy has been reduced to one or two years.
For a more in-depth discussion of this issue, click HERE.
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