As they reach the end of life, people suffering from dementia can present special challenges for caregivers. People can live with diseases such as Alzheimer’s or Parkinson’s dementia for years, so it can be hard to think of these as terminal diseases. But, they do cause death.
Making Difficult End-of-Life Decisions for a Person with Dementia
Dementia causes the gradual loss of thinking, remembering, and reasoning abilities, making it difficult for those who want to provide supportive care at the end of life to know what is needed. Because people with advanced dementia can no longer communicate clearly, they cannot share their concerns. Is Uncle Bert refusing food because he’s not hungry or because he’s confused? Why does Grandma Sakura seem agitated? Is she in pain and needs medication to relieve it, but can’t tell you?
As these conditions progress, caregivers may find it hard to provide emotional or spiritual comfort. How can you let Grandpa know how much his life has meant to you? How do you make peace with your mother if she no longer knows who you are? Someone who has severe memory loss might not take spiritual comfort from sharing family memories or understand when others express what an important part of their life this person has been. Palliative care or hospice can be helpful in many ways to families of people with dementia.
Sensory connections—targeting someone’s senses, like hearing, touch, or sight—can bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen their agitation.
When a dementia like Alzheimer’s disease is first diagnosed, if everyone understands that there is no cure, then plans for the end of life can be made before thinking and speaking abilities fail and the person with Alzheimer’s can no longer legally complete documents like advance directives.
End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care he or she would prefer. Someone newly diagnosed with Alzheimer’s disease might not be able to imagine the later stages of the disease.
Someone with Alzheimer’s disease may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored. He or she also may hide items around the house. This behavior can be annoying or even dangerous for the caregiver or family members. If you get angry, try to remember that this behavior is part of the disease.
In some cases, there might be a logical reason for this behavior. For instance, the person may be looking for something specific, although he or she may not be able to tell you what it is. He or she may be hungry or bored. Try to understand what is causing the behavior so you can fit your response to the cause.
You can take steps that allow the person with Alzheimer’s to rummage while protecting your belongings and keeping the person safe. Try these tips:
- Lock up dangerous or toxic products, or place them out of the person’s sight and reach.
- Remove spoiled food from the refrigerator and cabinets. Someone with Alzheimer’s may look for snacks but lack the judgment or sense of tasteto stay away from spoiled foods.
- Remove valuable items that could be misplaced or hidden by the person, like important papers, checkbooks, charge cards, jewelry, cell phones, and keys.
People with Alzheimer’s often hide, lose, or throw away mail. If this is a serious problem, consider getting a post office box. If you have a yard with a fence and a locked gate, place your mailbox outside the gate.
You also can create a special place where the person with Alzheimer’s can rummage freely or sort things. This could be a chest of drawers, a bag of objects, or a basket of clothing to fold or unfold. Give him or her a personal box, chest, or cupboard to store special objects. You may have to remind the person where to find his or her personal storage place.
It is well established that having a parent or sibling with Alzheimer’s increases a person’s risk of developing the disease. A new, NIA-supported study shows that even in the absence of close family members with Alzheimer’s, having extended family members with the disease increased a person’s risk. The findings, published April 9 in Neurology, could have implications for assessing risk using a broader view of family history.
A team of researchers from the University of Utah School of Medicine, Huntsman Cancer Institute, George E. Wahlen Department of Veterans Affairs Medical Center, Utah State University, and Brigham Young University mined the Utah Population Database. This record of Utah founders from the 1800s and their descendants, was used to identify individuals with genealogy data for at least 12 ancestors in the last three generations. The resulting pool of more than 270,000 individuals included 4,436 with Alzheimer’s as the primary or contributing cause of death.
To measure relative risk, the researchers compared the actual number of people who had Alzheimer’s with the expected number of Alzheimer’s cases based on various family histories of the disease. The analysis included first-degree relatives (parents, children, and siblings), second-degree relatives (grandparents, grandchildren, aunts and uncles, and nieces and nephews), and third-degree relatives (great-grandparents, great-grandchildren, grand nieces, grand nephews, great aunts and uncles, and first cousins).
In line with previous studies, the researchers found that having one or more first-degree relatives with Alzheimer’s put people at significantly higher risk for the disease. People with one first-degree relative with Alzheimer’s were 1.73 times more likely to develop the disease. Looking further into the family tree, people with two first-degree relatives with Alzheimer’s were nearly four times more likely to develop the disease. Those with three first-degree relatives were nearly two-and-half more times likely, and those with four were almost 15 times more likely to develop Alzheimer’s disease.
But even people whose parents or siblings did not have Alzheimer’s were at higher risk in most cases if they had second- or third-degree relatives with the disease, the researchers found. For example, people with three or four second-degree relatives who had Alzheimer’s were more than twice as likely to develop the disease. People who had only third-degree relatives with Alzheimer’s had a 43 percent increased risk when they had three or more such relatives with the disease.
(BPT) - If you have a senior family member who depends on you for care, you don’t have time to do extra housework. The good news is, advanced technology and new products have focused attention on making housework easier — or taking it completely out of our hands. Did you know you can leave many chores to technology, or use new products that make them easier?
Here are some examples:
Everyone’s seen robot vacuum cleaners, which help keep your floor free of dust and debris without you having to lift a finger. The latest technology uses Wi-Fi to control your robot vacuum, making the job even easier. You can also find robotic mops to clean your non-carpeted floors without you.
If you “don’t do windows,” you'll be happy to hear that the next step up from robot vacuums is of course robotic window cleaners. While some models currently on the market appear to be easier to use and more effective than others, this technology will likely be perfected in years to come.
The unpleasant task of cleaning up cat messes has inspired a few different types of self-cleaning litter boxes, some of which have a pretty high price point. It may be worth it, however, if you’re a cat owner and this is your least favorite chore.
Cognitive health—the ability to clearly think, learn, and remember—is an important component of brain health. Others include motor function, emotional function and sensory function.