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Does A Person With Dementia Know They Are Dying

Dementia Stages Before Death

The DYING Process in Dementia: How to know that death is close

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 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 dementia, 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.

Support Care Staff And Colleagues

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.

What To Expect At The End Of Life

The way people with Alzheimerâs disease die is different from person to person, but thereâs a basic pattern to the process. They slowly lose the ability to control basic body functions, such as eating, drinking, and toileting. After a while, their body shuts down.

They canât move much on their own. They donât want to eat or drink, and they lose weight. They often get seriously dehydrated. It can get hard for them to cough up fluid from their chest. In the last stages, many people with dementia get pneumonia.

Some other common signs that someone with Alzheimerâs disease is close to the end of their life include:

  • They speak very few or no words.
  • Theyâre not able to do very basic activities such as eat, move from a bed to a chair, or change their position in a bed or chair.
  • They canât swallow well.
  • They get sores because they sit or lie in the same position for too long. These are called bedsores or pressure ulcers.

Read Also: Does Medicare Cover Nursing Home Care For Dementia

How Dementia Complicates Hospice Eligibility

Estimating how long a person has to live is nearly impossible. It simply cannot be done with absolute accuracy in most cases, but a general idea is required in order to establish a persons eligibility for receiving hospice care. To qualify for most programs, an individual must have a terminal health condition and a life expectancy of six months or less. However, not all life-threatening diseases progress predictably. Any dementia caregiver can attest to the fact that a loved ones condition can improve or worsen on a daily basis. Fortunately, physicians and hospice staff who are knowledgeable about dementia, especially in the later stages, can help families determine when it is time to seek out comfort care.

Dementia can complicate the eligibility process for hospice but taking a persons personality prior to their diagnosis into consideration can help, explains Meredith Fields Lawler, LCSW, Director of Outreach Programs at the Crossroads Hospice Charitable Foundation based in Tulsa, Oklahoma.

Fields Lawler recalls a patient many years ago who had Lewy Body dementia and whose daughter was experiencing an immense amount of stress over the worsening of his symptoms. He would often lose track of time, and it had become hard to hold his attention. The daughter and I sat together and through tears she told me about what her dad was like while she was growing up.

Hope At The End Of Life

What does dementia look like

It may seem like a dying person can’t possibly feel hopeful, but dying people do retain an amazing capacity to hope. While they may have stopped hoping for a cure or for a long life, they may still hope to mend relationships with loved ones and to die peacefully.

Keeping the truth about dying from the one who is nearing death could rob them of the chance to reflect on their lives and fulfill their final wishes.

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When The Care Home Nurses Led Her To The Piano She Stared At It Blankly Put Her Hands On The Keys And Stopped And Then Stared Off Into Space Disinterested In The Thing That Had Given Her So Much Joy Her Whole Life

They say the disease takes a big downward step and then stabilizes, but that those periods of stability get shorter and shorter. That was the case in February. When we would come visit, her face would light up Hi, Poepie, she would say to me, even when she had lost all her other words. But one day in late February, my sister found her sitting alone in her room, staring vacantly and unresponsive. Nothing my sister did elicited a response. It was the first wakeup call of many for us. The next day, it was back to normal. My mother was her oldalbeit post-Alzheimersself, smiling and responding with yes, no, nods and shakes of the head.

Stage : Moderately Severe 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

Read Also: What Is The Color For Dementia

Final Signs And What To Do

If it has been established that the person is now dying and they become restless, this is often referred to as terminal restlessness. It is important to recognise restlessness and report it to a doctor or nurse immediately. Restlessness could be due to pain or high temperature and needs to be relieved.

If you notice the person is restless and you think they are uncomfortable, you could try helping them move into a more comfortable position. If this does not help, seek advice as they may need pain relief. Likewise, if you notice the person is hot to touch then they may need to be cooled down by a fan or cool flannel on their forehead and given rectal paracetamol by the nurse. They may also need medication to relieve the restlessness if the above does not help.

As death approaches the persons breathing pattern can change. This is caused by the person going into unconsciousness. It is often called Cheyne-Stoke breathing. The person may have periods where they have regular breathing, then stop breathing for a few seconds. Breathing usually gets faster and there can be long gaps in between. The person who is dying is unaware of this but family members may find this quite distressing. It is important that you or another senior member of staff explain to the relatives that this is what is to be expected and that the person is unaware. It is natural.

What Happens In The Later Stages Of Dementia

5 TIPS FOR TALKING TO YOUR LOVED ONE WITH DEMENTIA
  • Progressive loss of memoryThis can be a particularly disturbing time for family and carers as the person with dementia may fail to recognise close family members.
  • Increased loss of physical abilitiesMost people with dementia gradually lose their ability to walk, wash, dress and feed themselves. Other illnesses such as stroke or arthritis may also affect them. Eventually the person will be confined to a bed or a chair.
  • Increased difficulty communicatingA person with dementia will have increasing difficulty in understanding what is said or what is going on around them. They may gradually lose their speech, or repeat a few words or cry out from time to time. But continuing to communicate with them is very important. Remember, although many abilities are lost as dementia progresses, some – such as the sense of touch and ability to respond to emotions – remain.
  • Problems eatingIt is common for people in the later stages of dementia to lose a considerable amount of weight. People may forget how to eat or drink, or may not recognise the food they are given. Some people become unable to swallow properly. Providing nutrition supplements may need to be considered. If a person has swallowing difficulties, or is not consuming food or drink over a significant period of time and their health is affected, nutrition supplements may be considered for consumption other than by mouth.

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Caring For Someone With Dementia Towards The End Of Life

Please be aware – this information is for healthcare professionals. We also have information for the public.

You can use our My Learning form to reflect on how this page has helped with your continuing professional development.

People with dementia may experience problems with thinking, memory, behaviour and mobility. It can be difficult to recognise when someone with dementia is nearing the end of their life. You can support the person by communicating with them and helping them with any symptoms they have. If possible, its a good idea to plan the persons care in advance to help understand what they want from their care.

On this page:

How Can I Support Someone With Dementia Towards The End Of Life

Knowing the person will make it easier to provide person-centred care that is focused on what they need and want. It can help to know about their likes, dislikes and their wishes for how they want to be cared for. If the person isnt able to tell you about themselves, speak to their family, friends or other people who know them well.

Its a good idea to find out if the person has a copy of This is me , a document that records information about themselves. If you cant speak to the person, ask those close to them if they have a copy. They may have these details recorded in their care plan.

There are many ways to support someone with dementia at the end of life.

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The Arts As Therapy For Advanced Alzheimer’s Patients

In the remarkable book, “I’m Still Here: A New Philosophy of Alzheimer’s Care,” John Zeisel, Ph.D., describes the effect that art therapy has on people with dementia. Excursions to museums and art galleries with patients have shown Zeisel and his colleagues that folks with these diseases have some wonderful insights. Often, because of how dementia affects the brain, the person with dementia will see a painting differently than a person without the disease. But differently does not mean in a lesser manner. Zeisel illustrates times when a person with dementia can actually see more deeply into a piece of art and point out things that others miss.

People in more advanced stages of the disease still can benefit from being creative and productive as well. This could consist of making art, helping with safe kitchen projects, dancing and participating in life. Since Zeisel’s book is about treating these individuals by interacting with them in innovative ways, many of the people used as examples are not end-stage patients. However, Zeisel’s theory holds true throughout the person’s life. He believes that the person is “still there.”

Place Of Care In The Last Phase Of Life

Do People with Dementia Know They Have It

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 .

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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?

Eating And Drinking/eating Problems

Over the course of the disease difficulties in eating become more and more manifest with consequently reduced food intake and need for support with eating and drinking. People with advanced dementia have problems to swallow adequately. Moreover, they tend to keep food in their mouths, stop chewing or spit out food. In the last month of life difficulty with swallowing was found in 42% of persons and 32% exhibited observable weight loss . Advanced dementia is a risk factor for aspiration followed by pneumonia . Instances of reduced food intake dictate that acute medical events need to be examined, as possible causes for eating problems, these include. acute infections, pain, inadequate oral health, medication related side effects, and stroke . Dementia is often accompanied by deterioration in oral health and oral hygiene which, among other possibilities, may be induced by medication side effects of dry oral mucosa and possible subsequent damage to the oral cavity and teeth. Living with sore mouth is very burdensome, causes pain, hinders use of dental prosthesis and often reduces food intake of people with advanced dementia. Educating caregivers about oral hygiene has great potential for improving the oral health of people with dementia .

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Some Hospice Providers Specialize In Dementia Care

While all hospices have the ability to provide care for someone with dementia, there are providers that actively specialize in this field. These hospices typically have tailored programs that are designed to support everyone involved in the life of a patient affected by this disease and help them cope with the unique challenges it brings.

Regardless of a programs specialty, Fields Lawler suggests that family caregivers ask the following questions of potential providers to help ensure their loved ones will receive the highest level of care:

  • Is your program certified by Medicare?
  • Is your staff experienced in providing care to patients with dementia-related illnesses?
  • Do you offer specialized services to improve a dementia patients comfort?
  • What services do you offer to the families, caregivers and friends of patients with dementia?
  • Fields Lawler also emphasizes the importance of finding a provider that is staffed with well-trained and loving hospice nurses and aidesthe unsung heroes of these end-of-life programs. These people will spend the most time with your loved one and help them complete the most intimate tasks like bathing, dressing and toileting. Many individuals with dementia have a fear of water, so having patient aides with a keen understanding of this disease is a must.

    Read:A Checklist for Finding the Right Hospice Program

    Provide Support For Family And Friends

    How does a person with dementia see the world?

    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.

    Also Check: Do People With Dementia Dream

    Alma And Silvias Story

    Alma had been forgetful for years, but even after her family knew that Alzheimers disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Almas memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.

    This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didnt know how to best reflect her mothers wishes. Her decisions had to be based on what she knew about her moms values, rather than on what Alma actually said she wanted.

    Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers disease.

    However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimers. They may believe that the persons quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.

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