The guide to
Supporting a Loved One With Advanced Dementia
What is advanced dementia?
Care options in advanced dementia
Medical decisions and end-of-life planning
Understanding advanced dementia
Dementia is a progressive disease with several clear stages. Advanced dementia is marked by a need for near-total assistance with all aspects of daily life.
Communication and memory are severely impacted
Loss of appetite and difficulty chewing and/or swallowing
Protecting your brain
Limited mobility
Return
Next
Who makes decisions about dementia care?
Having a trusted care team in place is essential.
Another necessity is a health care proxy who is appointed to make medical decisions on behalf of the person with dementia. If the person with dementia never appointed one, this responsibility often falls to the closest relative or to an appointed guardian.
Protecting your brain
Return
Next
Before making care decisions, set care goals
In later stages, all types of dementia look similar. The final stage in advanced dementia tends to be the shortest as it only lasts one to two years. To navigate this stage, caregivers should be clear about the goals of care. Care goals in advanced dementia may include quality of life, dignity, comfort, health and longevity. Prioritizing these goals will help guide choices about treatments and other care decisions.
Protecting your brain
Return
Next
Comfort, dignity, quality of life
As part of the care team, you'll have to determine what the patient wants from their care. Should the care team prioritize comfort or longevity? Many families choose something in between, opting for types of care - including those that may cause some discomfort - to restore a desired amount of functionality or health.
Prioritize pain relief and comfort over curing underlying diseases.
Aggressive medical intervention - such as major surgery.
Protecting your brain
Prioritizing longevity
Prioritizing comfort
Return
Next
Medical decsions caregivers might face
Making medical decisions for someone in the late stages of dementia can be challenging. Care goals and input from the care team can help guide these choices, including doctors, advocates, and other family members who understand the patient’s situation and goals.
Hospitalization
Medications
Requests for euthanasia or M.A.I.D.
Surgery and other aggressive treatments
Protecting your brain
Return
Next
Further considerations
While care goals and approaches are highly personal, there are several considerations that may help you make an informed decision. The patient's preferences are high on the list. But for many families, round-the-clock, comfortable care might carry a prohibitive price tag.
Protecting your brain
Return
Next
End-of-life planning
Start early
Have discussions regarding your loved one's estate, care, and end-of-life preferences while they can participate.
Focus on values
If your loved one didn't prepare a living will or advance directive while they were able to do so, act on what you know or feel their wishes are.
Pick a point person
Choose a primary decision-maker who can manage information and coordinate family involvement and support.
Protecting your brain
Return
Next
Types of care
Care homes and in-home care
In late and final stages of dementia, patients rely on others even for basic needs. This may change the caregiver's ability to provide care.
Palliative care
Palliative care can be provided at any stage of illness, regardless of symptom severity. Comfort and wellbeing are prioritized, while pain is treated aggressively.
Hospice care
Hospice care is compassionate end-of-life care provided by healthcare professionals and volunteers with expertise, at home, in a facility, or at a hospital.
Protecting your brain
READ MORE
Return
Next
A palliative care physician and Alzheimer's daughter on late-stage Alzheimer's
READ MORE
Protecting your brain
Return
Next
When is it time for hospice care?
Signs that your loved one may be ready for hospice care
The person is fully reliant on others for all support and assistance
It's becoming impossible for the person to eat or drink safely
Dementia progression leads to other illnesses and injuries, compromising care priorities
Protecting your brain
READ MORE
Return
Next
More caregiving guidance for advanced dementia
Protecting your brain
Return
Next
Want to learn more?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
The risk of a negative reaction to anesthesia must be seriously considered even in the case of a critically necessary surgery for those with advanced stage dementia.
Hospitalization for any treatment may provoke an extreme stress response in some patients, which may prolong or complicate their recovery.
Over the counter and prescribed medications should be carefully evaluated for effectiveness and potential side effects or drug interactions.
While CPR can save a person's life, studies show it is three times less likely to be successful in a person with dementia.
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Transcript
The guide to
Supporting a Loved One With Advanced Dementia
What is advanced dementia?
Care options in advanced dementia
Medical decisions and end-of-life planning
Understanding advanced dementia
Dementia is a progressive disease with several clear stages. Advanced dementia is marked by a need for near-total assistance with all aspects of daily life.
Communication and memory are severely impacted
Loss of appetite and difficulty chewing and/or swallowing
Protecting your brain
Limited mobility
Return
Next
Who makes decisions about dementia care?
Having a trusted care team in place is essential.
Another necessity is a health care proxy who is appointed to make medical decisions on behalf of the person with dementia. If the person with dementia never appointed one, this responsibility often falls to the closest relative or to an appointed guardian.
Protecting your brain
Return
Next
Before making care decisions, set care goals
In later stages, all types of dementia look similar. The final stage in advanced dementia tends to be the shortest as it only lasts one to two years. To navigate this stage, caregivers should be clear about the goals of care. Care goals in advanced dementia may include quality of life, dignity, comfort, health and longevity. Prioritizing these goals will help guide choices about treatments and other care decisions.
Protecting your brain
Return
Next
Comfort, dignity, quality of life
As part of the care team, you'll have to determine what the patient wants from their care. Should the care team prioritize comfort or longevity? Many families choose something in between, opting for types of care - including those that may cause some discomfort - to restore a desired amount of functionality or health.
Prioritize pain relief and comfort over curing underlying diseases.
Aggressive medical intervention - such as major surgery.
Protecting your brain
Prioritizing longevity
Prioritizing comfort
Return
Next
Medical decsions caregivers might face
Making medical decisions for someone in the late stages of dementia can be challenging. Care goals and input from the care team can help guide these choices, including doctors, advocates, and other family members who understand the patient’s situation and goals.
Hospitalization
Medications
Requests for euthanasia or M.A.I.D.
Surgery and other aggressive treatments
Protecting your brain
Return
Next
Further considerations
While care goals and approaches are highly personal, there are several considerations that may help you make an informed decision. The patient's preferences are high on the list. But for many families, round-the-clock, comfortable care might carry a prohibitive price tag.
Protecting your brain
Return
Next
End-of-life planning
Start early
Have discussions regarding your loved one's estate, care, and end-of-life preferences while they can participate.
Focus on values
If your loved one didn't prepare a living will or advance directive while they were able to do so, act on what you know or feel their wishes are.
Pick a point person
Choose a primary decision-maker who can manage information and coordinate family involvement and support.
Protecting your brain
Return
Next
Types of care
Care homes and in-home care
In late and final stages of dementia, patients rely on others even for basic needs. This may change the caregiver's ability to provide care.
Palliative care
Palliative care can be provided at any stage of illness, regardless of symptom severity. Comfort and wellbeing are prioritized, while pain is treated aggressively.
Hospice care
Hospice care is compassionate end-of-life care provided by healthcare professionals and volunteers with expertise, at home, in a facility, or at a hospital.
Protecting your brain
READ MORE
Return
Next
A palliative care physician and Alzheimer's daughter on late-stage Alzheimer's
READ MORE
Protecting your brain
Return
Next
When is it time for hospice care?
Signs that your loved one may be ready for hospice care
The person is fully reliant on others for all support and assistance
It's becoming impossible for the person to eat or drink safely
Dementia progression leads to other illnesses and injuries, compromising care priorities
Protecting your brain
READ MORE
Return
Next
More caregiving guidance for advanced dementia
Protecting your brain
Return
Next
Want to learn more?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
The risk of a negative reaction to anesthesia must be seriously considered even in the case of a critically necessary surgery for those with advanced stage dementia.
Hospitalization for any treatment may provoke an extreme stress response in some patients, which may prolong or complicate their recovery.
Over the counter and prescribed medications should be carefully evaluated for effectiveness and potential side effects or drug interactions.
While CPR can save a person's life, studies show it is three times less likely to be successful in a person with dementia.