Planning Ahead - End of Life Care and Support

Although the topic of care and support at the end of your journey is not an easy one to discuss early in the disease, it is important to express your preferences to your partners in care so there is no confusion or questions when you are no longer able to make decisions. Some decisions you may need to make include your preference for the use of artificial or tube feeding when swallowing become difficult; mechanical respirators or ventilators if you are no longer able to breathe on your own; cardiopulmonary resuscitation (CPR) if your heart stops; surgery; use of antibiotics or use of medications that may no longer be providing a clear medical benefit (e.g., drugs that lower cholesterol, drugs for osteoporosis) as your condition declines. These care decisions should also include limitation, withdrawal or refusal of these procedures and treatments. Talk with your partners in care and especially your Power of Attorney for Personal Care now about your wishes regarding each of these items⁽¹⁾. For more information visit the Power of Attorney and "Living Wills" section of the website.

Some other advance care planning decisions include where you want to live, what you want to eat and wear, and your preferences for personal care such as grooming⁽²⁾. The ultimate goal for advance care planning is to maintain your dignity and comfort when you are no long able to communicate your wishes⁽¹⁾.

Be sure to think about your wishes for care in the later stages of dementia, and be sure you write it down as well. It is very important to communicate openly with your family, friends and your care team.

• Record items that are important to you so your family keeps them nearby.
• Record dates that are significant to you, so they can still be acknowledged.
• Record activities that you value, so that you can continue being part of those even if it requires someone doing it with or maybe eventually for you.
• Talk about when you and your family feel it is appropriate to move from your home into a home where there is more assistance provided daily.
• Be sure you have a substitute decision maker. It is helpful to let all of your friends and family members know who that person is.
• Discuss how you wish to be cared for in later life, and during the end stages of dementia and your life (do you want heroic measures taken, or do you just want to be kept comfortable with palliative care)⁽³⁾.

The goal of this care is to prolong life using available types of treatment. This could be kidney dialysis for kidney failure, tube feeding when swallowing is no longer possible, or cardiopulmonary resuscitation (CPR) if the heart stops⁽¹⁾.

The goal of this care is comfort as death is near. Pain control is a priority and emotional and spiritual support is offered to you and your family and friends⁽²⁾.

A do not resuscitate (DNR) order is another type of "living will" or advance directive. A DNR is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Unless informed otherwise, medical staff will perform CPR if a person's heart has stopped or if they have stopped breathing. You can use an advance directive form or tell your doctor you do not want to be resuscitated. In this case, your doctor puts a DNR order in your medical chart. It is best to do this early, before you are very sick and are considered unable to make your own decisions.

If you are taking life sustaining medication for other conditions, you may also want to talk to your doctor about your preference to continue or discontinue these drugs in the later stages of the disease⁽³⁾.

Some guidelines to keep in mind during the later stages of the disease include:

• Ensure there is a consistent routine for your family member, including consistency of the person providing care.
• As a family partner in care, use your powers of observation – you know your family member best. Relay your observations with the person providing care for your family member.
• Touch is an important communication tool. Continue to express your care and concern towards your family member through touch – holding hands, lightly stroking the arm, etc.
• Simply being present is important. This can be difficult for some family members but just being there can communicate so much to the person with dementia.
• Be conscious to expressions of pain and discomfort (e.g., noisy breathing, groans, facial expressions, body language, pacing or being excessively fidgety, change in habits, exhibiting unwanted behaviours).
• Use body language and hand gestures to demonstrate instructions.
• Do not forget that although your family member with dementia may no longer be able to communicate in the same way, they are still a person worthy of respect and dignity – allow your family member opportunities for involvement.
• If you are the Power of Attorney for Personal Care, ensure that medical staff are aware of your family member's wishes.
• Continue to engage with your family member⁽¹⁾. It is important to go where your family member is at. For example, if they are at a time when they were much younger, go there with your family member by asking them about their experiences and relationships then.
• Sing a song or play music that your family member enjoyed in the past, read a favourite poem or story, or share favourite photos⁽²⁾.

If your family member expressed a wish to stay at home during the later stages, consider hiring health care professionals to assist in your care responsibilities. Contact your local Alzheimer Society chapter for some options. You can also contact your local Community Care Access Centre , family physician and Hospice services for support.

Some community supports that can provide assistance during this time include Meals on Wheels respite services, and family visiting programs. It is also wise to accept offers of assistance from your other family members and friends. You will need a lot of support during this stage – avoid isolating yourself. Seek out family support groups and counselling services to help you with your own grieving process⁽³⁾.