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How Long Can Someone Live With Severe Dementia

Support Care Staff And Colleagues

Living with dementia: the long goodbye | DW Reporter

It is important to remember that staff caring for a person in the last hours and days of their life may find this to be emotionally challenging or distressing. This may be especially so for those who have worked with the person for some time and who have built a meaningful relationship with that person and their family. Those newer to care work, or who have little previous experience of care at the end of life, may find this a worrying or stressful time. It is important that care staff are given support by managers and colleagues, are able to ask for advice and reassurance where needed, and have the space to acknowledge their feelings.

See End of life care and carers’ needs for more information.

How Is Dementia Treated

Treatment of dementia depends on its cause. For example, dementia that has developed due to vitamin deficiency can be treated with vitamin supplements and hence is reversible. Other causes of dementia such as depression, thyroid problems can also be treated.

For progressive dementias, including Alzheimer’s disease, no treatment can halt its progression, and research is still going on to find out the same. But, some medications may temporarily help relieve its symptoms such as memory loss and confusion. These are:

Sociodemographics And Clinical Characteristics

Age, gender, living alone , and migrant status at the time of dementia diagnosis were derived from the national population registry managed by Statistics Netherlands. Migrant status was categorized into non-Western migration background and Western background .

The use of care at home at any point during 2008 to 2014 was derived from a national registry from the Dutch Central Administration Office made available for research by Statistics Netherlands. From 2011, use of day care was also recorded.

Polypharmacy was defined as the dispensing of 5 or more drugs and hyperpolypharmacy as the dispensing of 10 or more drugs from different chemical subgroups in the year of dementia diagnosis. Data were derived from a nationwide database from the National Healthcare Institute and made available for research by Statistics Netherlands and contained all medicines dispensed by pharmacies for which the costs are reimbursed under the statutory basic medical insurance. This covers medicines for community-dwelling people and for people living in residential care homes, but not medicines dispensed in hospitals and nursing homes. The database does not include over-the-counter medicines.

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Factors That Determine Longevity

One study of 438 patients in the U.K. found that the main factors that determine how long a person lives after being diagnosed with Alzheimer’s disease are age, gender, and level of disability. Here are the main research findings:

  • Women lived an average of 4.6 years after diagnosis, and men lived 4.1 years.
  • People diagnosed when under age 70 lived 10.7 years compared to 3.8 years for people over 90 when diagnosed.
  • Patients who were frail at the time of diagnosis did not live as long, even after adjusting for age.
  • Overall, the average survival time for someone in the study diagnosed with Alzheimer’s disease or dementia was 4.5 years.

Lewy Body Dementia Prognosis

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Lewy body dementia is a form of dementia characterized by the development of abnormal deposits in the brain. People with Lewy body dementia have trouble with movement as well as cognitive decline. Thinking problems generally show up before movement problems. As progresses, affected individuals may also experience visual and sleep problems.

Life expectancy for a person with Lewy body dementia is approximately 2 to 8 years after the onset of noticeable symptoms.

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Care In The Later Stages Of Dementia

There are medicines used in the early stages of dementia that manage some of the behavioural symptoms. In the later stages some of these medicines can do more harm than good causing severe side effects that can increase confusion and frailty. It also becomes harder to diagnose and manage some of the normal illnesses that older people get such as Urinary Tract Infections . UTIs can exaggerate some symptoms of dementia and increase confusion sometimes know as delirium.

Pain is also something that can be present in the later stages of dementia, but can be harder to diagnose if the person isnt able to communicate it. For all of these reasons, its important to stay vigilant when looking after someone with dementia, and to talk to the GP if you are worried about anything.

There are dementia living aids and products that can help you to care for someone living with dementia. Something like a simple dementia clock or personal alarm can make the world of difference to your life and the live of the person you care for.

When Should I Ask For Support

Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.

If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.

There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.

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When Do Dementia Patients Stop Eating

When a patient stops or refuses to eat, things can be very depressing for the caregiver. Drinking and eating are complex and have to do with a control center that is within the brain, which controls the muscles in the throat and neck area.

Dementia affects this part of the brain as it progresses and things like choking, coughing, grimacing as one swallows, clearing the throat, movements that are exaggerated, especially of the tongue and mouth, refusing to swallow, and spitting the food can be seen. This usually happens in the later stages of the disease.

Stage : Moderately Severe Dementia

Living with dementia

When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

  • Delusional behavior

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How Hospice Can Help With End

In addition to helping you in recognizing the signs of dying in the elderly with dementia, bringing in hospice care will help with the physical and emotional demands of caregiving. Nurses will be able to adjust medication and care plans as the individuals needs change. Aides can help with bathing, grooming, and other personal care. Social workers can help organize resources for the patient and family. Chaplains and bereavement specials can help the family with any emotional or spiritual needs. Additionally, family members can contact hospice at any time, and do not need to wait until it is recommended by the patient’s physician.

To learn more about the criteria for hospice eligibility or to schedule a consultation, please contact Crossroads using the blue Help Center bar on this page for more information on how we can help provide support to individuals with dementia and their families.

Using The Gds To Measure Dementia Progression

As the disease progresses, different signs and symptoms will become increasingly obvious. While there are several scales to measure the progression of dementia, the most common scale is the Global Deterioration Scale for Assessment of Primary Degenerative Dementia . The scale is also known as the Reisberg Scale. According to the GDS, there are seven different stages of Alzheimers disease correlating with four distinct categories: no Alzheimers, mild Alzheimers , moderate Alzheimers , and severe Alzheimers .

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What Affects The Speed Of Progression

The speed at which dementia progresses varies a lot from person to person because of factors such as:

  • the type of dementia for example, Alzheimers disease tends to progress more slowly than the other types
  • a persons age for example, Alzheimers disease generally progresses more slowly in older people than in younger people
  • other long-term health problems dementia tends to progress more quickly if the person is living with other conditions, such as heart disease, diabetes or high blood pressure, particularly if these are not well managed
  • delirium a medical condition that starts suddenly .

There is no way to be sure how quickly a persons dementia will progress. Some people with dementia will need support very soon after their diagnosis. In contrast, others will stay independent for several years.

Each Persons Journey Is Different

Preventing Alzheimer

Each person has a unique health history. This health history is directly related to how AD will affect them. Its helpful, however, to know the statistics about average life expectancy, as well as how lifestyle and age can alter that length of time.

If you are a caretaker or were recently diagnosed with AD, you can find empowerment and courage in knowing how the condition tends to progress. This allows you to plan with your family and caretakers.

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How Long Will You Live After A Dementia Diagnosis

Its sad but true that people with dementia usually have shorter lives. However, exactly how much shorter their life will vary enormously from person to person. Heres the key information about life expectancy, but remember, these are only general statistics so think carefully about whether you want to know before you read on.

How Important Are The Stages Of Dementia

The stages of dementia are just a guide and there is nothing significant about the number three. Equally, dementia doesnt follow an exact or certain set of steps that happen in the same way for every person with dementia.

It can be difficult to tell when a persons dementia has progressed from one stage to another because:

  • some symptoms may appear in a different order to the stages described in this factsheet, or not at all
  • the stages may overlap the person may need help with some aspects of everyday life but manage other tasks and activities on their own
  • some symptoms, particularly those linked to behaviours, may develop at one stage and then reduce or even disappear later on. Other symptoms, such as memory loss and problems with language and thinking, tend to stay and get worse with time.

It is natural to ask which stage a person is at or what might happen next. But it is more important to focus on the person in the present moment. This includes their needs and how they can live well, and how to help them with this.

For more support on living well with dementia see The dementia guide: living well after diagnosis or Caring for a person with dementia: a practical guide .

And for more information about treatment and support for the different types of dementia go to the following pages:

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Life Expectancy And Alzheimers Disease

Alzheimer’s disease is the most common cause of dementia. Abnormal proteins cause steadily increasing brain damage. This initially affects thought and memory and remember and progressively causes failure of all body systems.

Alzheimers is typically diagnosed at the mild dementia stage when memory and planning problems start to affect daily life. The life expectancy for an individual with Alzheimer’s is usually between 8-12 years from diagnosis however, someone fit and healthy on diagnosis could live considerably longer. In one American study, people lived from between one and twenty-six years after first spotting symptoms, so the variation is enormous.

Tips For Changes In Communication And Behavior For People With Dementia

Living with dementia The long goodbye | DW Documentary

Communication can be hard for people with Alzheimers and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:

  • Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
  • Allow the person to keep as much control in his or her life as possible.
  • Respect the persons personal space.
  • Build quiet times into the day, along with activities.
  • Keep well-loved objects and photographs around the house to help the person feel more secure.
  • Remind the person who you are if he or she doesnt remember, but try not to say, Dont you remember?
  • Encourage a two-way conversation for as long as possible.
  • Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.

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Planning For End Of Life Care

When a person with dementia is approaching the end of their life, it can be a very difficult time for them and the people around them. However there are things you can do to support the person and other close family or friends.

Around this time you will probably be dealing with a range of different health and social care professionals. It will really help if there is good communication between all of the people involved in providing the persons end of life care.

What Is The Best Way To Communicate With A Person With Pdd

PD-related mood and motor changes can impact communication cognitive changes and Parkinsons disease dementia can further these difficulties.

  • It is not usually helpful to try to reason or argue with someone experiencing a hallucination or delusion. Stay calm and be patient. If the person is frightened by the hallucination or delusion, try to redirect their attention to something else.
  • You may find acknowledging what the person is seeing, even if you do not see it, can reduce stress.
  • Speak slowly and at eye level. Communicate in simple sentences.
  • Ask one question at a time and wait for an answer.
  • Limit distractions. Turn off the TV or radio before asking a person with PDD to do something.
  • Consider causes behind disruptive behavior: the person may be hungry, thirsty, tired, in pain, frustrated, lonely or bored.
  • If the person is stuck on an idea, try agreeing with them, then changing the subject.
  • Its OK to use humor to diffuse stressful situations but avoid negative humor or sarcasm these can be misunderstood.

Page reviewed by Dr. Jori Fleisher, MSCE, Assistant Professor, Department of Neurological Sciences at Rush University Medical Center, a Parkinsons Foundation Center of Excellence.

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Tips For Home Safety For People With Dementia

As a caregiver or family member to a person with Alzheimers or related dementias, you can take steps to make the home a safer place. Removing hazards and adding safety features around the home can help give the person more freedom to move around independently and safely. Try these tips:

  • If you have stairs, make sure there is at least one handrail. Put carpet or safety grip strips on stairs, or mark the edges of steps with brightly colored tape so they are more visible.
  • Insert safety plugs into unused electrical outlets and consider safety latches on cabinet doors.
  • Clear away unused items and remove small rugs, electrical cords, and other items the person may trip over.
  • Make sure all rooms and outdoor areas the person visits have good lighting.
  • Remove curtains and rugs with busy patterns that may confuse the person.
  • Remove or lock up cleaning and household products, such as paint thinner and matches.

Do You Die From Dementia

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The forgetfulness, confusion and communication problems of dementia are caused by increasing damage to cells in the brain. But the brain doesn’t just control memory and thought it is also the control centre for the body. Progressive brain cell death will eventually cause the digestive system, lungs, and heart to fail, meaning that dementia is a terminal condition. Studies suggest that, on average, someone will live around ten years following a dementia diagnosis. However, this can vary significantly between individuals, some people living for more than twenty years, so it’s important to try not to focus on the figures and to make the very most of the time left.

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Stage : Age Associated Memory Impairment

This stage features occasional lapses of memory most frequently seen in:

  • Forgetting where one has placed an object
  • Forgetting names that were once very familiar

Oftentimes, this mild decline in memory is merely normal age-related cognitive decline, but it can also be one of the earliest signs of degenerative dementia. At this stage, signs are still virtually undetectable through clinical testing. Concern for early onset of dementia should arise with respect to other symptoms.

Signs Of Death In Elderly With Dementia: End Stage

Dementia is a term used to describe the persistent or chronic decline in ones mental processes and this include personality changes, impaired reasoning, and memory loss. The most common form is Alzheimers disease and it accounts for over 70 percent of all the dementia cases.

It is one of the greatest causes of death in the United States with over five million people living with the disease in the country alone. One of the age groups affected by dementia is the seniors. If you are a caregiver, it is important to know the signs of death in elderly with dementia.

Most progressive dementias and Alzheimers disease do not have any cure. The diseases get worse with the passage of time, but the timeline can be very different from one person to the next.

Caring for persons with the diseases can be stressful and very challenging, especially when their personality begins to change and their cognitive function starts to decline. It is possible that the individual will not even recognize the people who are closest and dearest to them.

As the disease progresses, the person needs more and more support from the caregiver and the family. If the person is elderly, the caregiver needs to know about all the signs that the patient may be dying.

You may need to put the patient on hospice so as that he or she can get the appropriate care during such moments. This offers the family and the patient spiritual, physical, and emotional care.

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