Challenges People With Advanced Dementia Face
The main reasons to seek hospice care for a loved one with late stage Alzheimer’s disease are to ensure that he or she receives the best care possible, and to help you cope with the ongoing loss and care of your loved one as he or she declines. Researchers have discovered that individuals who have diagnosis of Alzheimer’s disease face challenges at end of life that many other hospice recipients don’t.
Determining the life expectancy of a person who has Alzheimer’s disease can be difficult. As a result, many people who would benefit from services do not receive them until very late in the disease process. Signs of end stage dementia include more confusion, lack of appetite, increased incontinence, pain, weight loss, being withdrawn or having an increase in agitation. Your loved one may become ill due to urinary or respiratory infections. Mobility may be very limited, even in bed.
People who have advanced dementia may suffer from pain that goes unrecognized. Sometimes poor appetite, impaired sleep and agitation are due to pain. If the person has contracted limbs, arthritis or bed sores it is likely that he or she is having pain.
A hospice nurse can help you determine if pain is a factor for your loved one. Sometimes administering a mild analgesic gives a clue to whether or not pain is a factor. For example, if a person doesn’t sleep well at night and you give a mild analgesic such as acetaminophen or ibuprofen and they start sleeping at night, you may realize that pain is an issue.
You may face difficult decisions regarding nutrition and hydration for your loved one. Some people consider the use of feeding tubes; however tube feedings increase the risk of pneumonia and other infections. They do not improve quality of life or functional abilities. Simply offering foods and drink as long as the person shows interest is much more humane, in my opinion.
Take Care of Yourself
Many people who provide care to loved ones who have advanced Alzheimer’s disease struggle with clinical depression, guilt, and exhaustion. You must get help for yourself. Whether you talk to a friend who “gets it” or seek professional help; do not expect that you will be able to provide all of the care that your loved one needs all of the time.
As the disease progresses, you may feel that your loved one has already “left you” even though he or she is physically present. This grief is normal; it comes with the territory when you care for a loved one with Alzheimer’s disease.
It’s okay to ask for help. Help in the face of end stage Alzheimer’s is not a luxury; it is a necessity.