End Of Life With Alzheimer’s

December 3, 2022

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What To Expect At The End Of Life

End of Life | Aging Matters | NPT Reports

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.

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 .

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

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Support Family And Loved Ones

It is vital that the persons family and loved ones are aware that the person may be in the last few days or hours of life. Share information in a gentle and sensitive manner, drawing on those staff who have the strongest relationships with the person and their family. Giving family members space to explore their feelings and concerns is a critical part of good end-of-life care.

Often, family and loved ones want to be present when the person dies. They should know that changes can happen suddenly and the person may die, for example, when they have just popped out of the room to use the bathroom.

Sometimes, family members may not want to be present at the death. Family and relatives should never feel that they should stay, but always give them the opportunity to stay and to be involved in care as they wish.

We’d Love To Provide Some Clarity For Any Questions You May Have

When you book a free consultation with us, we will answer any questions you might have about Hospice Care, our services, and our team. We want to understand your loved ones health condition. If they are eligible for Hospice care, we will work together to figure out the best plan for their unique needs.

Some common symptoms of advanced Alzheimers include:

Difficulty swallowing
Limited reasoning abilities and other signs of dementia
Delusions and hallucinations
Aggression, agitation, and other behavioral issues
Difficulty forming sentences or finding the right words

Because of these distressing symptoms, it is common for a person with Alzheimers to become bedridden and require round-the-clock, end-of-life care.

According to the American Journal of Alzheimers Disease & Other Dementias, it may take years before your loved one progresses to the final stages of Alzheimers disease or other forms of dementia. The average duration is about three to four years from diagnosis until death. However, some people may live up to ten years with proper medical treatment.

Recommended Reading: What Is Lewy Body Disease With Dementia

What Are The Signs Of End

It is important for caregivers to know when an individual with dementia is close to the end of their life, because it helps ensure they receive the right amount of care at the right time. It can be difficult to know exactly when this time is due to the variable nature of dementias progression, but understanding common end-of-life symptoms of seniors with dementia can help. Below is a timeline of signs of dying in elderly people with dementia:

Final Six Months

A diagnosis of another condition such as cancer, congestive heart failure or COPD
An increase in hospital visits or admissions

Final Two-to-Three Months

Speech limited to six words or less per day
Difficulty in swallowing or choking on liquids or food
Unable to walk or sit upright without assistance

Hands, feet, arms and legs may be increasingly cold to the touch
Inability to swallow
Terminal agitation or restlessness
An increasing amount of time asleep or drifting into unconsciousness
Changes in breathing, including shallow breaths or periods without breathing for several seconds or up to a minute

Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion. Once a patient begins experiencing any of the above symptoms, it is time to speak with a hospice professional about how they can help provide added care and support.

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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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.

Coping With Grief And Loss As A Late

How to Talk to Someone With Dementia

While the death of a loved one is always painful, the extended journey of a disease such as Alzheimers or some cancers can give you and your family the gift of preparing for, and finding meaning in, your loved ones end of life. When death is slow and gradual, many caregivers are able to prepare for its intangible aspects, and to support their loved one through the unknown. While it won’t limit your grief or sense of loss, many find it less traumatizing than being unprepared for the imminent death of a loved one.

Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisors can help you work through these feelings and focus on your loved one. Hospice and palliative care specialists and trained volunteers can assist not only the dying person, but also caregivers and family members, too.

Help With Legal Needs

Families who cannot afford a lawyer can still prepare documents and express their wishes in advance. Samples of basic health planning documents are available online. Area Agency on Aging officials may provide legal advice or help. Other possible sources of legal assistance and referrals include state legal aid offices, state bar associations, local nonprofit agencies, foundations, and social service agencies.

Visit the National Hospice and Palliative Care Organization for free sample documents.

For help with legal advice, contact the Eldercare Locator.

Signs Death Is Near In People With Dementia

In the period of time leading up to the end of life, an individual with dementia may show signs that they are nearing death. They may:

Have more infections

Have difficulty showing facial expressions

It’s important to note that there are different types of dementia. The patterns of symptoms vary due to the specific brain changes that occur in each type.

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Questions To Ask About End

As a caregiver, you will want to understand how the available medical options presented by the health care team fit with the needs of both the family and the person with dementia. You might ask the health care team questions such as:

Who can help me with end-of-life care for my loved one living with dementia?
How will your suggested approaches affect their quality of life?
What are my options if I can no longer manage the care of my loved one at home?
How can I best decide when a visit to the doctor or hospital is necessary?
Should I consider hospice at home, and if so, does the hospice team have experience working with people living with dementia?

Planning For The Future After A Dementia Diagnosis

Why Is Planning For End Of Life Important

You may find it hard to think or talk about end of life and it may be upsetting to read some of this information. But having these important conversations with the person, and planning ahead, can mean they have a better experience at the end of their life. It can also be helpful for you and for others close to the person.

Planning for the end of life is important for anyone who has a life-limiting condition. For a person with dementia, its important to try and have these conversations early, while its still possible to make shared decisions. However, many people dont feel ready to think ahead about dying. In this case, knowing the persons values, wishes and beliefs more generally can help when on their behalf.

Advance care planningAdvance care planning .

Read more about making choices about future care , including information about lasting power or attorney and advance decisions.

What Are The Symptoms Of Dementia 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.

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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.

Late Stage Alzheimers: What To Expect

Fear of Forgetting

Alzheimers disease affects every aspect of personality and behavior. Patients become forgetful. They struggle to talk, lose control of their emotions, and neglect basic tasks. By the time they enter late stage Alzheimers, they will no longer be able to function on their own. Whereas before they retained some limited autonomy, now patients depend entirely on their family. Motor skills become fatally compromised, placing even greater demands on caregivers. While there will still be moments of happiness, families must be prepared for the hard choices they face in order to ensure their loved ones physical and emotional wellbeing.

Recommended Reading: How Do Anti Dementia Drugs Work

Should There Always Be Someone In The Room With A Dying Person

Staying close to someone who is dying is often called keeping a vigil. It can be comforting for the caregiver or other family members to always be there, but it can also be tiring and stressful. Unless your cultural or religious traditions require it, do not feel that you must stay with the person all the time. If there are other family members or friends around, try taking turns sitting in the room.

How Can Family And Friends Help Primary Caregivers

Family and friends may wish to provide primary caregivers relief while they are focusing on the dying loved one. Keep in mind that the caregiver may not know exactly what is needed and may feel overwhelmed by responding to questions. If the caregiver is open to receiving help, here are some questions you might ask:

How are you doing? Do you need someone to talk with?
Would you like to go out for an hour or two? I could stay here while you are away.
Who has offered to help you? Do you want me to work with them to coordinate our efforts?
Can I help maybe walk the dog, answer the phone, go to the drug store or the grocery store, or watch the children for you?

Providing comfort and care for someone at the end of life can be physically and emotionally exhausting. If you are a primary caregiver, ask for help when you need it and accept help when it’s offered. Don’t hesitate to suggest a specific task to someone who offers to help. Friends and family are usually eager to do something for you and the person who is dying, but they may not know what to do.

In the end, consider that there may be no perfect death so just do the best you can for your loved one. The deep pain of losing someone close to you may be softened a little by knowing that, when you were needed, you did what you could.

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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 is not 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 cannot 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.

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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