What do I need to know about caring for the person?

Physical changes at end of life

People in the final months of dementia will experience increased mental and physical deterioration and will need care for 24 hours per day. It is always best if care can be provided with a palliative care approach in the person's home or long-term care home as transfers to a hospital may cause great distress for the person.

The progressive nature of dementia means symptoms will ultimately worsen over time. How quickly this occurs varies from person to person. In the final weeks before death, the person goes through changes as the body gradually shuts down. As they lose their capacity for recognizable speech, nonverbal communication through the senses of touch, smell, vision and hearing will become increasingly important.

Some of the physical changes which often occur in the later stages of dementia include:

• Profound memory loss and loss of ability to communicate with words
• Loss of mobility, inability to sit up
• Difficulty swallowing foods and liquids
• Decreased interest in taking food and liquids, weight loss
• Poor blood circulation (colder hands and feet)
• Impaired bladder and bowel function
• Prone to infection
• Loss of facial expression
• Decreased senses
• Increased sleepiness or agitation/restlessness
• Increased phlegm and mucus/secretions
• Irregular breathing
• Irregular pulse
• Skin problems
• Hiccups
• Pain

Please note that some of the above changes may occur months/weeks prior to the end-of-life stage.

Effects of dehydration

Dehydration of the body as the person is dying is generally not painful in itself, and with the physical changes that occur at this stage, the person generally does not feel pain as intensely. A lower volume of fluids in the body also decreases cough, congestion, nausea and bloating.

Mouth and eye care

At the end-of-life stage, breathing through the mouth can cause the mouth and tongue to become dry and create discomfort. You can learn the steps from a home care person or staff at the long-term care home to keep the lips moist and to provide mouth care including cleaning the teeth, tongue and inside of the mouth.

For relief of dry eyes, you may need to use artificial tears in the person’s eyes a few times throughout the day.

Additional resources

• For practical suggestions and tips to help you respond to these care issues, please read Late stage and End of Life in the Alzheimer Society “Progression” series.

Caring at home

Providing care will become more challenging as the disease progresses and the person you are caring for becomes more dependent on you. If you are caring for the person at home, you will need to work more closely with a physician, visiting nurse, social worker, occupational therapist and home support services to create and carry out a plan for the best care possible through this stage of the disease.

As the person’s disease progresses and both of your needs change, you may need services such as home care, respite care, community programs like Meals on Wheels, and long-term care homes. Talk to your local Alzheimer Society to learn about the services that are available in your community. This can be a difficult time when you need more support for yourself. Try to carve out some time to take care of your own physical and emotional health too.

“Because my parents took care of me for at least the first 18 years of my life, it felt right to me to take care of them in the final years of their lives. Being their caregiver was tremendously rewarding. But I couldn’t have done it all on my own. I was lucky to find some great volunteers to help out.” – Barbara Dylla, a former caregiver in Montreal.

Care in a long-term care home or hospital

If the person lives in a long-term care home or is in the hospital, keep current with the staff about the person’s changing condition, care and treatment. Ask to have regular care planning meetings with staff to discuss how best to meet the person’s needs at the later stages of this disease.

Work with staff to provide person-centred care

Person-centred care involves a relationship between staff, the person with dementia and the family to provide care that is shaped by the person’s unique interests, likes and dislikes. Both person-centred care and end-of-life care have a common goal of improving the quality of living and dying for the person with dementia.

Communicating appropriate information about the person’s history, previous occupation and daily routines can greatly help staff in providing more person-centred care. The Alzheimer Society’s All about me booklet may be useful in recording this information.

Importance of palliative care

The overall goals of palliative and end-of-life care are to improve the quality of living and dying for people with dementia and their family. A palliative approach to care is not only beneficial at the end of life but often for months in advance. Palliative care can start much earlier and be provided at the same time as potentially curative treatments. A person may continue to receive any necessary medications. These include medications to manage chronic conditions such as diabetes or high blood pressure, as well as those that prevent pain and discomfort.

The Canadian Virtual Hospice defines palliative care as “an approach to care that focuses on comfort and quality of life for those affected by progressive, life threatening illness. The goal of palliative care is to control pain and other symptoms, support emotional, spiritual and cultural needs and maximize functioning.” In the past, a palliative care approach was most commonly offered to individuals in the final stages of dying from cancer. But there is now a consensus among experts that a palliative approach to care for people in advanced dementia is considered the best practice and that the care should be individualized to meet the needs, values and preferences of the person and their family.

“It’s important for staff to be informed about the ‘little things’ that will help keep the person comfortable.” – Barbara Dylla, a former caregiver in Montreal.

Effective comfort care requires that staff have the skills to assess facial expressions, movements, reactions and changes in the individual so they can effectively diagnose and treat any discomfort. A person-centred approach to palliative and end-of-life care involves not only good physical care, but also compassionate communication and support to minimize the person’s emotional and spiritual distress, and maximize their comfort and well-being. The staff are there for you and other family members to confide in and to provide support.

Planning for end-of-life care should begin as soon as possible after a diagnosis of dementia. As part of this planning, people with dementia and their families may want to consider long-term care homes that adopt a palliative approach to end-of-life care and give staff the specialized training needed to provide personalized palliative care. Also, it may be helpful to check if the long-term care home provides a private space for the person and the family to spend final days or hours together.

Additional resources

• One chance to get it right, by the Leadership Alliance for the Care of Dying People, provides information on how individualized palliative care plans that reflect the needs and preferences of the dying person can be developed and carried out
• Comfort care at the end of life for persons with Alzheimer’s disease or other degenerative diseases of the brain: a guide for caregivers, by the Health and Social Services Centre — University Institute of Geriatrics of Sherbrooke (CSSS-IUGS)
• Webinar: Dementia and End of Life Care, by the Alzheimer Society of Canada and brainXchange

Understanding pain management

It is important to remember that people with dementia feel pain, just like everyone else. Major causes of pain often stem from immobility, arthritis, infections or a combination of conditions, referred to as co-morbidities. A person who has constant pain needs regular pain medication to control it and be comfortable.

Challenges of recognizing pain

As a person with dementia progresses through the disease, they will become less and less able to express themselves verbally, thus making it increasingly difficult to tell others when they are in pain. As a result, pain often goes undetected and untreated, causing the person with dementia to communicate their distress through their behaviour, such as becoming agitated, withdrawn or combative. You may be able to find out if the person is in pain by asking direct simple questions such as “Are you in pain?”, “Is it sore? or “Does it hurt?” but often the person with advanced dementia will not be able to answer your question verbally.

Non-verbal signs of pain

In order to ensure that the person with dementia is not experiencing untreated or inadequately managed pain, it is important to look for non-verbal signs of pain such as grimacing, moaning, uncharacteristic behaviours or physical changes such as sweating or elevated heart rate. A change in the person’s behaviour, which may indicate pain, is often noticed first by family and friends.

“My siblings and I learned to recognize the subtle signs – wincing, frowning or increasing agitation – that indicated our father was in pain or discomfort. Having an end of life comfort care plan in place meant we could request an extra or increased dose of morphine to alleviate his suffering.” – Barbara Dylla, a former caregiver in Montreal.

This intimate knowledge of the person with dementia is valuable and should be shared with care providers. However, showing such signs does not always indicate pain and the person may instead be scared or frustrated. All sounds and changes should be considered for what the person is trying to communicate.

Pain Scale for people with dementia

Pain scales can also help staff and family caregivers assess whether a person with dementia is in pain, especially if the person can’t tell you in words.

These pain scales record the signs and symptoms that are likely to indicate the presence and intensity of pain that the person is experiencing. For example, the Abbey Pain Scale can be used to help measure pain for persons with dementia who cannot express themselves verbally. This scale suggests six possible signs of pain:

• Vocalizations such as whimpering, groaning, crying
• Facial expressions such as looking tense, frowning, grimacing, looking frightened
• Changes in body language such as fidgeting, rocking, guarding a part of the body, becoming withdrawn
• Behavioural changes such as increased confusion, refusing to eat, change in usual behaviour patterns
• Physiological changes such as temperature, pulse or abnormal blood pressure, perspiring, flushing or becoming pale
• Physical changes such as skin tears, pressure areas, arthritis, contractures

Opioids

Opioids, such as morphine, are often the most effective medications to relieve moderate to severe pain. Pain medication is often given regularly to control pain in the last weeks and days of illness. In addition to morphine, medications for anxiety or hallucinations are often given because they can be highly effective in providing a more comfortable end of life.

Since pain is easier to prevent than it is to relieve, it should be treated on a regular basis rather than on an ‘as required’ basis. Some caregivers have concerns about the use of opioids, fearing that the person may develop an addiction. Many experts believe that the risk of addiction for people who take opioids for pain near the end of life is very low because a brain in pain reacts differently than a brain not in pain. Discuss the benefits and risks of opioids with health-care providers to help you decide if they are the best option for managing pain, especially toward the end of life.

Additional resources

• Pain Matters: A Family Guide to Pain Management in Dementia (PDF)

Comforting the person

“You have to take yourself out of the situation and think of the person who is dying. It’s not about you; it’s about your loved one. It was about making my mom comfortable and going through the transition from life to death with her.” – Debbie George, a caregiver in Nova Scotia.

Even though the person may not seem to be aware of you during the last stage, your presence is still a comfort. Here are some suggestions on how to offer comfort to the person:

• Connect through the senses such as holding the person’s hand, smelling a perfume together or listening to music that the person has enjoyed in the past.
• Continue to touch and reassure the person that you are close by.
• Speak calmly and naturally.
• If needed, wash the skin gently and blot dry, using as little force and friction as possible.
• Raise the head of the bed if breathing is difficult or raise the person’s upper body with pillows.
• Gently massage hands and feet with lotion.
• Tell stories, reminisce about past events, read aloud or listen to music together.
• Keep lights low.
• When the person no longer accepts food or drink, keep the lips moist and get direction on providing mouth care including cleaning the teeth, tongue and inside of the mouth.
• Speak soothingly and reassuringly to remind the person that they are safe and cared for.
• Focus on the person’s physical, emotional and spiritual needs.
• Use proper pain control medications to relieve any pain or discomfort.
• Use slow, gentle movements to re-position the person to relieve pressure areas but do so in one part of the body at a time.
• Follow the person’s lead. For example, if they wince when trying to move them, stop doing it and try at a later time.

“She wanted us to hold her hand at all times. We felt we were giving her comfort. We stayed with her and stroked her hand, making her transition as easy as possible.” – Debbie George, a caregiver in Nova Scotia.

It is important to check with health-care professionals before offering any food or fluids to the person. Some people may begin to experience difficulties with swallowing. You can find some strategies that may help when offering food and fluids to a person experiencing difficulties with swallowing in the Late stage brochure from the Alzheimer Society “Progression” series.

Saying goodbye when the end is near

Rachael Mierke got the call at 2 a.m. from a nurse at the long-term care home letting her know her father’s breathing had changed significantly and that the end was near. Rachael appreciated and was comforted by the nurse’s compassionate words. “She said, ‘I’ll stay with your dad until you come, so he isn’t alone.’ I knew someone was watching over him and that she cared. That was beautiful – that intimacy and thoughtfulness,” says Rachael, a First Link^® Coordinator with Alzheimer Society of Manitoba in Winnipeg.

As a former palliative care nurse, Rachael recognized the familiar pattern of end-stage breathing as soon as she arrived in the room and saw her dad. He liked country and western music, so she put on some Johnny Cash songs in his room. “We watched him and kept the music quiet because dad was a quiet man. I said we were with him and loved him. I talked about how he had been a good father and about all the good things he had done. I believe hearing is the last thing to go and thought that if he could hear us it would be soothing,” she says.

As Rachael and her sister stayed with him during those final hours, something remarkable happened. “My sister and my dad had a difficult relationship,” explains Rachael. “Near the very end, dad sat upright, looked at my sister and said, ‘Well, well, well.’ He was so pleased to see her. She looked at him and said, 'Dad, I’m here.' It was a perfect death. There was communication between them and his pleasure in seeing her. It was a very powerful experience for me and a gift for both of them,” she says.

More information and resources

Comfort Care for Eating and Drinking: Resources for Long-Term Care (Hub). Ontario Centres for Learning, Research and Innovation in Long-Term Care. This hub provides resources about a comfort care approach to eating and drinking for residents in long-term care and at the end-of-life stage. A comfort care approach focuses on enhancing the resident’s quality of life and easing the physical and emotional factors associated with eating challenges. There are resources for family members and residents, as well as for care providers/team members.