What Is End Stage Dementia Like

Provide Support For Family And Friends

Keep any family or friends informed about what is happening in a gentle, sensitive and supportive way. This will help reassure them that the person is getting the care they need. You could consider signposting them to appropriate services, such as an Admiral Nurse or local Alzheimers Society. It can also help to give them an opportunity to talk about what is happening.

Be Aware Of Their Eating And Drinking

The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.

You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.

Do Dementia Patients Know They Are Losing Their Memory

In the earlier stages, memory loss and confusion may be mild. The person with dementia may be aware of â and frustrated by â the changes taking place, such as difficulty recalling recent events, making decisions or processing what was said by others. In the later stages, memory loss becomes far more severe.

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How Can I Tell If A Person At End Of Life Has Delirium

For someone in the later stages of dementia, delirium can be hard to spot. This is because the symptoms of delirium can be very similar to those of dementia. However, the key difference is that the symptoms of dementia tend to come on slowly, over months and years. Delirium comes on in hours and minutes and can vary a lot over the day.

What Are The Symptoms

Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.

A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:

• Day-to-day memory difficulty recalling events that happened recently.
• Repetition repeating the same question or conversation frequently in a short space of time.
• Concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks .
• Language difficulties following a conversation or finding the right word for something.
• Visuospatial skills – problems judging distances and seeing objects in three dimensions.
• Orientation – losing track of the day or date, or becoming confused about where they are.

Some people have other symptoms including movement problems, hallucinations or behaviour changes.

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Towards The End Of Life

It can be very difficult for family and carers to prepare for the end, but by thinking about it and making some plans, it may be a little easier. When someone reaches the final stages of life one of the main concerns is to ensure that they are comfortable and as pain free as possible. If you are concerned that the person with dementia may be in some pain or discomfort, discuss this with the doctor and nursing staff.

Incontinence And Toilet Issues

Another example of end-stage dementia signs is toilet problems and incontinence. As the illness progresses, there is a possibility that the person will EXPERIENCE some accidents while trying to use the washroom.

It can be anything from the occasional urine or fecal leaks or a total loss of control when the person needs to use the toilet.

Many factors can cause this, such as:

• Forgetting where the facilities are or forgetting to visit the toilet in time
• Constipation
• Not recognizing the need to use the toilet
• Prostate gland issues, etc.

To avoid inconvenience, there are many incontinence products that patients with dementia can use.

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What Can Hospice Do For A Patient With Dementia

Your hospice team evaluates the dementia or Alzheimer’s patient’s status and updates the plan of care as symptoms and condition change, even on a day-to-day basis. The goal of hospice is to relieve physical and emotional distress so patients can retain their dignity and remain comfortable.

Hospice offers comprehensive services for patients with dementia:

• Individualized care plan As dementia progresses, patients lose the ability to express their needs. VITAS will design a plan that addresses pain, hydration, nutrition, skin care, recurrent infection and agitationall common problems associated with dementia.
• Care for patients wherever they live in their homes, long-term care facilities or assisted living communities. If symptoms become too difficult to manage at home, inpatient hospice services can provide round-the-clock care until the patient is able to return home.
• Coordinated care at every level A plan of care is developed with the advice and consent of the patients neurologist or other physician. A team manager ensures that information flows between all physicians, nurses, social workers and, at the patients request, clergy. In addition, hospice coordinates and supplies all medications, medical supplies and medical equipment related to the diagnosis to ensure patients have everything they need.
• Emotional and spiritual assistance Hospice has the resources to help patients maintain their emotional and spiritual well-being.

Do Dementia Patients Know What They Are Saying

These communication hiccups happen all the time to most people, but dementia affects the brain so that language problems become more noticeable. Someone with Alzheimers, for instance, wont remember phrases, or be able to learn new phrases. Slang and common expressions become hard or even impossible to remember.

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Preclinical Alzheimers Or No Impairment

You may only know about your risk of Alzheimers disease due to your family history. Or, your doctor may identify biomarkers that indicate your risk.

If youre at risk of Alzheimers, your doctor will interview you about memory problems. However, there will be no noticeable symptoms during the first stage, which can last for years or decades.

Abnormal accumulation of a type of protein called tau in the fluid around your brain and spinal cord is associated with the development of Alzheimers disease. Changes in the levels of this protein can occur about 15 years before symptoms start.

Caregiver support: Someone in this stage is fully independent. They may not even know they have the disease.

What Does Stage 3 Look Like

At this stage, the individual starts showing subtle signs of mild cognitive impairment that may only be noticeable to close friends and family. For example, someone may start repeating questions or telling a story over and over. If the individual is still in the workforce, their ability to perform their job will start to decline. Concentration becomes more difficult, and the person may be unable to perform overly complex tasks like organizing a party or doing their own taxes.

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Offer Touch And Human Contact

Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved ones bedside, stay with the person when the relative has a break, and again hold the persons hand.

The care team would need to plan how you can provide this kind of one-to-one support.

For Patients Speaking To Families

Education is key. Educate yourself first. By now, youve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your family may be misinformed about the realities of hospice. View our video on dispelling hospice myths. Read and share “Considering Hospice: A Discussion Guide for Families” at HospiceCanHelp.com

Determine what your loved ones know. Before bringing up hospice, make sure your loved ones have a clear understanding of your health status. People handle difficult information in different ways. If family members are not accepting or understanding of your prognosis, you might want to have your physician, clergy or a trusted friend speak with them on your behalf.

Discuss your goals for the future, as well as theirs. As a patient, your greatest concern might be to live without pain, or to stay at home, or to not become a burden. Ask your loved ones what their concerns are when they consider the coming months, weeks and days. Explain that hospice is not giving up. It is an active choice to ensure that everyones needs are met.

Take initiative. Remember, its up to you to express your wishes. Sometimes, out of concern for your feelings, your family or loved ones might be reluctant to raise the issue of hospice for you.

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What Are The Average Life Expectancy Figures For The Most Common Types Of Dementia

The average life expectancy figures for the most common types of dementia are as follows:

• Alzheimers disease around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimers live for longer, sometimes for 15 or even 20 years.
• Vascular dementia around five years. This is lower than the average for Alzheimers mostly because someone with vascular dementia is more likely to die from a stroke or heart attack than from the dementia itself.
• Dementia with Lewy bodies about six years. This is slightly less than the average for Alzheimers disease. The physical symptoms of DLB increase a persons risk of falls and infections.
• Frontotemporal dementia about six to eight years. If a person has FTD mixed with motor neurone disease a movement disorder, their dementia tends to progress much quicker. Life expectancy for people who have both conditions is on average about two to three years after diagnosis.

To find out about the support available to someone at the end of their life, and to their carers, family and friends, see our End of life care information.

You can also call Alzheimers Society on 0333 150 3456 for personalised advice and support on living well with dementia, at any stage.

Dementia Connect support line

How Does Dementia Lead To Death

The actual death of a person with dementia may be caused by another condition. They are likely to be frail towards the end. Their ability to cope with infection and other physical problems will be impaired due to the progress of dementia. In many cases death may be hastened by an acute illness such as pneumonia.

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Whats Happening In The Brain And Body

The brain isnt only involved in memory, thinking and emotions. The brain is actually in charge of every physical aspect of the body as well. It fuels muscle movement, nerve function and various other bodily functions.

The brain deteriorates and shrinks in end stage Alzheimers, and tau protein tangles accumulate. Because of this, the patient will likely see a sharp decline in physical ability. That might mean difficulty walking, standing up straight or even sitting without support. In the final stages, patients may lose the ability to swallow, or to control the bladder and bowels.

Because the person wont be as physically active, and is possibly bed-bound, other concerns include skin health and pain. The breakdown of the body also means a person becomes more vulnerable to infections like pneumonia. This makes caregiving a lot more complicated and difficult, according to the National Institute on Aging.

Changes In Mood And Emotions

Having a brain disease that changes your perception of the world around you often causes dramatic changes in mood and emotion.

Everyone is different, and everyone exhibits different symptoms, meaning there is no definitive list of what to expect however, were here to offer guidance about some of the most common end-stage dementia symptoms.

Patients who are experiencing dementia’s last stage symptoms may experience:

• Anger and frustration

• Mood disorders such as depression and anxiety

• Self-awareness that their faculties are lessening

If you think you are experiencing any signs of dementia and live alone, now would be the time to discuss moving in with a loved one or into an assisted living facility that best suits your needs.

If you are reading this and have a loved one who is already in an assisted living facility, transitioning from assisted living to memory care may be the option that works best for all.

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Special Prerequisites Of Palliative Care In Advanced Dementia

Originally, palliative care emerged in the UK for cancer patients in response to insufficient care for the terminally ill. Eventually conditions other than cancer were acknowledged as being in need of palliative care. Independent of specific diagnosis palliative care should be provided for people with life-threatening disease and their families âthrough the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritualâ to maintain or improve quality of life . Parallel to the development of palliative care dementia care developed separately both based on the same values for enhancing care of people with dementia and improving quality of life . Notably lessons learned from palliative care for people with cancer cannot simply be transferred to palliative care for people with dementia.

As dementia progresses people experience reduced or lost verbal communication abilities with a consequent impact on care. Despite restrictions in verbal communication people with advanced dementia can use other means of nonverbal communication such as body tension or minimal movements, turning their head away, frequency of breath and paralinguistic signals are all means of communication to express their current wishes or needs . Agreement or rejection reactions in a situation can be observed, although interpretation of nonverbal communication varies between health professionals .

Care In The Last Days Of Life With Dementia

We use the words dying or terminal to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. This section will help you to anticipate and manage symptoms, as well as provide some tips to help prepare family and loved ones through what is a highly emotional and uncertain time.

I dont want my mother to die alone. I want her to be comfortable and to die with dignity.

A daughter of a person with dementia.

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What Are The Signs Of End

Dementia is a scary diagnosis to deal with for both patients and their loved ones. Often the unknowns leave families with endless questions. One of the biggest questions being:

What are the signs of end-stage dementia?

We have been with families as they handle their loved ones battle with dementia, and we are here to help.

This guide was created to help you understand the symptoms of end stage dementia and what care options your loved one may have.

What Are The Main Types Of Dementia

Alzheimers disease is the most common cause of dementia, accounting for around 2 out of every 3 of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.

It is possible to have more than one type of dementia at the same time. Alzheimers is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called mixed dementia.

The symptoms of dementia vary depending on the disease, or diseases, causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimers Society website .

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What Does Best Practice Look Like Introducing The Priorities For Care Of The Dying Person

There are five priorities:

• Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the persons needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.
• Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.
• Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
• Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
• Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

Palliative Care In Advanced Dementia

• 1Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
• 2Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
• 3Clinical Trials Center , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
• 4Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

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Can You Prevent Dementia

Not knowing what exactly causes dementia can make it difficult to definitively say how to avoid the disease. However, researchers do believe that healthy lifestyle choices can help prevent cognitive decline. Here are some things that you can do to help prevent dementia:

• Exercise – Experts recommend 30 minutes of moderate exercise three to four days per week
• Sleep properly – There are mounds of evidence that show improved sleep can help prevent dementia
• Stay active mentally – Learning new things can stimulate the brain, which can improve cognitive function
• Stay social – Social contact is believed to help prevent Alzheimers
• Moderate alcohol intake – One drink per day for women and one or two for men can reduce the risk for Alzheimers

While its still not 100% proven that these lifestyle changes will prevent dementia it is recommended that you live the healthiest life possible. We do know that healthy lifestyles can prevent other chronic problems.