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End Of Life With Dementia

Why Knowing Life Expectancy Is Useful

End of Life Care: Achieving dignity for those with dementia

Knowing what to expect, including life expectancy helps with planning. Someone predicted to survive for five or six years, as opposed to two years, will want to make more extensive plans, including getting an estate in order, activity planning, and budget. Knowing how quickly the disease is expected to progress symptomatically can impact care decisions. If the disease is predicted to come on very quickly, for example, then skipping traditional assisted living and looking into memory care or a nursing home might be the best option.

Knowing when full-time care becomes a requirement, either at-home or in a memory care residence, is especially useful given the high cost of care. It is estimated that 50% of nursing home residents have some level of dementia and over 60% of nursing home residents care is paid for by Medicaid. Medicaid eligibility is complicated, and families can spend up to 5 years waiting for a loved one with dementia to become Medicaid-eligible. Therefore, knowing how soon care is required can make a huge financial difference.

Contribute anonymously to our dementia life expectancy database. Start here.

How Should Professionals Manage End Of Life Care

Health professionals should normally carry out a risk assessment to identify things that could worsen the persons quality of life during this time. They should also keep you updated as the persons condition changes and involve you in any decisions. If you are unable to meet with them in person, this should still happen over the phone.

There should also be an up-to-date care plan for the person. This plan should include end of life plans and should be shared with those involved in the persons care.

Some local areas have special staff who co-ordinate end of life care for people with dementia. Ask the GP, community nurse or local hospice about what is available in the persons area.

The persons spiritual needs, practices and traditions will be individual to them. These needs should be addressed and respected as much as the medical aspects of care. Personal or religious objects, symbols or rituals may provide comfort, both for the person and those close to them. These could also include music, pictures, smells or tastes.

Supporting Dementia Caregivers At The End Of Life

Caring for people with Alzheimers or another dementia at the end of life can be demanding and stressful for the family caregiver. Depression and fatigue are common problems for caregivers because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.

It is not uncommon for those who took care of a person with advanced dementia to feel a sense of relief when death happens. It is important to realize such feelings are normal. Hospice care experts can provide support to family caregivers near the end of life as well as help with their grief.

If you are a caregiver, ask for help when you need it and learn about respite care.

Also Check: What Stage Of Alzheimer’s Is Aphasia

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:

When Should I Ask For Support

Improving End of Life Care for People with Dementia during Covid

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.

Also Check: Can Hip Fracture Cause Dementia

What Do Elderly People Think About Life And Death

As we get older, death seems to be nearer than when we are younger. In as much as anyone can die regardless of age, for an older person, it seems like it is more likely to happen, especially when dealing with different health conditions that the body does not handle as it used to in the younger years.

For older persons, death does not always spell sorrow and terror, as is the case with younger people. Many of the older people are contented with what the short-term future has for them. You may think that people may get anxious as they become older, but this is not the case. Older people do not have much sadness and anxiety, especially related to death. They are actually more positive about life and death.

As we grow older, our perspective shifts. This is when you realize that things are not as they always seem. Most people fear death because they feel that they will lose the things that they have been working so hard to get over the years. However, for older people, this attachment to things acquired is not really pronounced. This is how some of the fear of death actually melts away.

When you look around you and you realize that there are things that are a part of you that will outlive you actually help in a major way. This could be the legacy we have in children or gardens planted. There are yet others who place value on their country, their religion, or families that live on even after they are gone.

The Later Stages Of Dementia

It is important to remember that not everyone living with dementia will want to know what is ahead of them. However, if youre caring for someone living with dementia, it is useful to know about the later stages of the disease so you can make decisions about future care options.

In the later stages of dementia, symptoms such as poor memory, confusion and other forms of cognitive impairment are joined by more physical symptoms.

Dementia is an illness of progressive cell damage. It starts in the parts of the brain that deal with memory and slowly moves to parts of the brain that control other functions. Sadly, this will eventually cause major organs to stop working. Below you can find a summary of some of the things you can expect when caring for someone in the later stages of dementia.

Our advice page on looking after someone with dementia might also be helpful.

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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.

Recognise And Meet Spiritual And Cultural Needs

Dementia: End of life care

Care providers also need to be attentive to meeting a persons spiritual or cultural needs at the end of life. For one person, this may involve making sure they have contact with a religious leader in the last days or hours of their life, while another may want their favourite composers music to be played quietly but continuously throughout the period. This information should be recorded clearly, and should not come as a surprise to care staff who will know the person their life history, preferences and nature well. You should also discuss these aspects with the persons family or friends.

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Tips For Managing Dementia End

Because individuals with advanced dementia will often have difficulty communicating, it is important that caregivers keep a close eye on their loved one for signs of pain or discomfort. These signs may include moaning or yelling, restlessness or an inability to sleep, grimacing, or sweating. This may also signal that its time to call hospice or a palliative care team to help with the pain management.

If an individual with end-stage dementia is having trouble sitting up without assistance, hospice can provide a hospital bed or other equipment to lift their head.

Perhaps the hardest thing for families is when a loved one with dementia is no longer able to eat or swallow. Because an individual with dementia is unable to understand the benefits of feeding tubes or IV drips, they will often be incredibly distressed and attempt to remove them, causing added pain and risk of infection. Instead, focusing on keeping the individual comfortable. Supporting them with mouth care to prevent their mouth from becoming dry will allow them to make their final transition in peace.

Can Dementia Be Cured

There is no cure for dementia.5 However, research has shown that there are ways to delay the onset or progression of dementia. By making adjustments to your daily routine, people can help improve and maintain a healthy brain. These changes include eating a healthy diet, remaining active and moving more, and socializing with friends and family. Check out US Against Alzheimers Brain Guide for more tips.

Recommended Reading: What Does The Brain Look Like With Dementia

End Of Life Care In Frailty: Dementia

The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care.

This chapter addresses specific issues which may arise in people living with dementia towards the end of life. Please to view the other chapters in this series.

Dementia is a condition that kills. According to one study,1 the average life expectancy from diagnosis to death is 4.5 years, and average survival rate in this study varied from a high of 10.7 years for the youngest patients to a 3.8 years for the people diagnosed after their 90th birthday.

People may die with dementia because of the dementia itself but many more die with complications, which are more likely to result in death in someone with dementia than in healthy individuals.

One example is pneumonia, which has poorer survival among those with dementia, as they are more likely to present late, forget to comply with treatment or resist treatment altogether, and may not engage in exercise, rehabilitation and other aspects of care. Outcomes are worse for people who struggle to understand that they are ill, why they are ill and what they need to do about it.

Physical Difficulties In The Later Stages Of Dementia


The physical changes of late-stage dementia are partly why the person is likely to need much more support with daily living. At this stage they may:

  • walk more slowly, with a shuffle and less steadily eventually they may spend more time in a chair or in bed
  • be at increased risk of falls
  • need a lot of help with eating and so lose weight
  • have difficulty swallowing
  • be incontinent losing control of their bladder and bowels.

The persons reduced mobility, in particular, raises their chances of blood clots and infections. These can be very serious or even fatal so it is vital that the person is supported to be as mobile as they can.

Also Check: Why Do Older People Get Dementia

Problems With Eating And Drinking

Changes in eating and drinking patterns are also considered to be part of end-stage dementia signs.

Most people will lose their appetite, which makes them eat less. As a result, most people with dementia will lose weight in an unhealthy manner.

Losing weight may have an effect on a persons IMMUNE system, making it harder for the body to fight off other diseases.

Many people will have a problem with eating and drinking because they develop mouth sores or have problems swallowing.

Swallowing issues arise when a persons reflexes and muscles cease to function correctly.

Common Symptoms And Complications Treatment Options

As the disease progresses people with dementia become more and more dependent on other persons for almost all daily activities, care and treatment, t suffering considerable limitations in the last year . As shown above people with advanced dementia suffer a range of complex needs and symptoms, and symptom burden is similar to people with cancer or frailty . People with advanced dementia rarely express their needs and burdensome symptoms spontaneously, relying on their caregiversâ sensitive perception and interpretations of their verbal and nonverbal signs.

Recommended Reading: What Is The 7th Stage Of Alzheimer’s

The Patients Specific Wishes

When someone is in the early stages of dementia, they may still be able to express their wishes for end-of-life care. Having a conversation about what a parent or loved one wants out of hospice care can help families make tough decisions later. For some patients, remaining in the home as long as possible may be the goal, while others might be worried about becoming a burden on caregivers.

When Is Your Dementia Patient Ready For Hospice Care

End-of-Life Care in Dementia

Alzheimer’s disease and other progressive dementias are life-altering and eventually fatal conditions for which curative therapy is not available. Patients with dementia or Alzheimers are eligible for hospice care when they show all of the following characteristics:1

  • Unable to ambulate without assistance
  • Unable to dress without assistance
  • Unable to bathe properly
  • Incontinence of bowel and bladder
  • Unable to speak or communicate meaningfully

Thinking of dementia as a terminal illness from which patients will decline over a matter of years, rather than months, allows healthcare professionals to focus explicitly and aggressively on a palliative care plan.2

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Dementia Symptoms And Treatment How Palliative Care Can Help

People with dementia begin to not recognize hunger and thirst, and lose the ability to feed themselves and the ability to eat. Families and caregivers often must face heartbreaking decisions when a person can no longer eat. They may have to decide whether to use artificial feeding. Unfortunately, medical research shows that this feeding method does not actually works to prolong life. Feeding through a tube to the stomach or through a vein might even cause more lung infections and pneumonia.

Dementia is sometimes hard to see because it progresses slowly. This is another challenge for caregivers. It is even harder because family members can get used to the slowly worsening new normal. Caregivers begin to do more and more without even realizing it, and they become exhausted.

Statistics show that people who are taking care of loved ones with dementia have a much higher risk of getting sick themselves. They may die earlier compared to those who are not caregivers. Again, heres where palliative care is so important. The team can help with in-depth communication and support for the family caregivers.

The palliative care team will see to it that a patient gets care in a skilled nursing facility if home care is no longer possible. Palliative care specialists will also help patients and families deal with the complex health care system. The goal is always quality of life.

Dementia Care Toward The End Of Life

Some thoughts on the social, emotional and creative needs of those living with dementiaWe are persons of meaning, being and community. And as we age and move toward the end of life, the well-being of our personhood should concern us. Each of usincluding those who have become fragmented by the impact of dementia and are less able to respond or retain prior identities, in part or in wholehas the right to expect care that is person-centred

I n the title of her 1998 book, Christine Boden asked Who Will I Be When I Die? In order to deliver care, we should put ourselves in the place of the person and ask: How will others see me when I die? How will my world be touched? How will I touch my world?

At risk of unfavourable positioning

Persons living with dementia are at risk of social disadvantage1 and being treated in ways that diminish being. In this respect, the most important function of the care frame is to help vitalize and support identity, self and being. This requires particular sensitivity to both the dimensions of the mind and of the place that a person inhabits . While the ability to fully relate to these dimensions can fracture over time, important residual elements of needs and relationships remain even toward the end of the life.

Value from personal relationships

Able to adjust

The evidence, in my opinion, bears out the need for those living with dementia to be able to fully express themselves and to interact as far as possible with others and place.

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