HEALTH CARE DIRECTIVE FOR DEMENTIA
Introduction:
A doctor once commented to the writer that as we reduce early fatality from more and more diseases such as heart disease, cancer and the like, new diseases become prevalent; those of old age. Dementia seems to bear that out.
Brains age and age unevenly. As people live on to their eighties, nineties and beyond, the number suffering from dementia necessarily increases and the wise person will make appropriate plans. It is estimated that over thirty percent of persons in their eighties suffer from some form of dementia.
While durable powers of attorney for health care are extremely useful, the unique characteristics of brain decay require particular provisions that allow the holder of the health directive to understand what the afflicted person would like in the various predictable stages of dementia. Someone completely bedridden and nonresponsive needs a very different set of instructions than someone who forgets where he or she lives.
The directive below has been created by medical experts to assist the person to allocate instructions among the various stages of dementia so that the holder of the power may adjust the instructions to medical personnel to adjust to the needs at the various stages. It allows you to instruct your caregiver as to your wishes now, while fully competent.
This form has been created for persons to use without charge and can be printed out, executed before a notary or witnesses, and given to the selected persons to hold. One person whose family has a history of dementia said that executing these directions with her wishes has given her great peace of mind. The following articles and form was made available by a foundation specializing in this issue.
Health Directive for Dementia www.dementia-directive.org
What If I Had Dementia?
Planning for the future
Alzheimer's disease is one of the most common problems people face in their 70's and 80's. One of the most important things you can do is tell people who would be taking care of you what you would want for medical care if you were to develop worsening dementia.
What is dementia?
Over 5-20 years, people with Alzheimer's (and other forms of dementia) lose their memory and completely lose the ability to understand what's going on around them. Eventually people with dementia no longer recognize people they know, and eventually need help from others cleaning themselves up after they go to the bathroom.
Some people with dementia become extremely irritable and aggressive, striking out at people they love. Caring for them can become very difficult. There is no
known cure for dementia. Gradually people lose the ability to speak, eat, and walk. Eventually people die from dementia, often from dementia-related pneumonia. This process takes anywhere from 5 years to 20 years. The average
time it takes dementia to progress to a severe form (of not being able to dress or feed oneself) is about 8 years.
One of the most important questions to consider is: What kind of medical care would you want if you were to develop worsening dementia?
Why it’s important to express your wishes:
People with advancing dementia lose the ability to make decisions for themselves. Their families need to make medical decisions for them.
Giving family members guidance about what kind of care you'd want if you were to develop worsening dementia can ease the burden of their decision making and make you feel more se cure that you'll receive the care that you would want.
Your guidance today will help the people taking care of you in the future.
What kinds of guidance can you give?
As dementia gets worse, many medical tests and procedures become harder for people to go through, with more risk of side effects and bad reactions. As people lose the ability to understand what is happening they can become fearful and agitated by unfamiliar surroundings.
As their mind fades away, many people feel that life loses much of its meaning, especially when they're no longer able to understand what is happening around them. At points along the way, many people might not want medical care which would keep them alive longer. Instead they might want only medical care that would help keep them comfortable.
On the following pages are descriptions of the stages of dementia. By filling out this form you can give guidance to your loved ones. Read the description of each stage, then mark the box that reflects what goals of medical care you would want for yourself if you were at that stage of dementia.
Stage 1 - Mild dementia
People lose the ability to remember recent events in their lives.
Routine tasks become difficult (such as cooking.) Some tasks can become more dangerous (such as driving.)
If you were to be at this stage of dementia what level of medical care would you want for yourself?
Select one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage.
If I had mild dementia then I would want the goal for my care to be:
1. To live for as long as I could. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.
2. To receive treatments to prolong my life, but if my heart stops beating or I can't breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.
3. To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill. If a treatment, such as antibiotics, might keep me alive longer and could be given in the place where I was living, then I would want such care. But if I continued to get worse, I would not want to go to an emergency room or a hospital. Instead, I would want to be allowed to die peacefully. Reason why: I would not want the possible risks and trauma which can come from being in the hospital.
4. To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness. I would not want any care that would keep me alive longer.
Stage 2 - Moderate dementia
People lose the ability to have conversations, and communication becomes very limited.
People lose the ability to understand what is going on around them. People require daily full-time assistance with dressing and sometimes toileting.
If you were at this stage of dementia what level of medical care would you want?
Select one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage.
If I had moderate dementia then I would want the goal for my care to be:
1. To live for as long as I could. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.
2. To receive treatments to prolong my life, but if my heart stops beating or I can't breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.
3. To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill. If a treatment, such as antibiotics, might keep me alive longer and could be given in the place where I was living, then I would want such care. But if I continued to get worse, I would not want to go to an emergency room or a hospital. Instead, I would want to be allowed to die peacefully. Reason why: I would not want the possible risks and trauma which can come from being in the hospital.
4. To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness. I would not want any care that would keep me alive longer.
Stage 3 - Severe dementia
People are no longer able to recognize loved ones and family members. People may be awake through the night, disruptive, and yelling. Many become angry and agitated and sometimes even violent. People need round-the-clock help with all daily activities, including bathing and wiping off their genitals, generally needing to wear an adult diaper at all times.
If I had severe dementia then I would want the goal for my care to be:
1. To live for as long as I could. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.
2. To receive treatments to prolong my life, but if my heart stops beating or I can't breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.
3. To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill. If a treatment, such as antibiotics, might keep me alive longer and could be given in the place where I was living, then I would want such care. But if I continued to get worse, I would not want to go to an emergency room or a hospital. Instead, I would want to be allowed to die peacefully. Reason why: I would not want the possible risks and trauma which can come from being in the hospital.
4. To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness. I would not want any care that would keep me alive longer.
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Signature Print Name Date
EITHER NOTARIZATION OR TWO WITNESSES SHOULD EXECUTE THIS DOCUMENT.
THIS SHOULD BE KEPT WITH YOUR DURABLE POWER OF ATTORNEY FOR HEALTH CARE ALWAYS.