TAKING CARE: LIVING AND LOVING WITH MEMORY LOSS
Caregiving for Loved Ones with Dementia
Why do people with dementia act that way?
Years ago, if an older person became forgetful and confused, they were usually labeled as “senile.” The term later became “organic brain syndrome.” This term, sometimes shortened to OBS, acknowledged that there was something physical that was causing mental and cognitive changes. The term we hear now is “dementia.” Dementia is an umbrella term that includes Alzheimer’s Disease as the most prevalent dementia. Dementia, including Alzheimer’s, can be accurately diagnosed these days by qualified professionals.
People with dementia may be exhibiting behaviors that are concerning to others. There are not absolute symptoms, as each person’s situation is very different, but there may be commonalities.
The person may ask a repetitive question, they may lose the ability to sequence simple tasks like getting themselves dressed, they may develop suspicious feelings and lose trust in others. So why would they act that way?
A repetitive question like “what day is it?”, “what should I do now?” or “where is Bob?” can wear a caregiver out. Keep in mind that a person with dementia keeps returning to the underlying concern (“what day is it?”) but has lost short term memory, so that the answer never really satisfies their question—the answer does not “stick,” so the question keeps cycling back. This is not intentional but rather is a consequence of their dementia.
How should we respond to these repetitive questions? We can try writing down the answer so that our loved one can refer to it, but if that does not work, simply answer with a short answer. It is tempting to give long explanations to the person, but that is a frustration to both of you. Since your loved one’s memory may have lost the ability to process logic, providing logic will not be useful.
Why does a person with dementia sometimes get cranky? Quite possibly it is due to fear, although he or she cannot express that they are fearful. Fear results when the person begins to realize that he or she cannot do things that used to be simple. There is now a dependency that was not there in the past. It is a fearful situation when a person realizes that they can no longer remember or communicate, and that fear may be expressed as anger or suspicion. I sometimes visualize that people with dementia, especially advanced dementia, feel like they are suddenly living in a strange place where they are the only ones who cannot understand the language being spoken around them. It would be a terrible feeling.
When we care about someone who has symptoms of dementia, we must remember that their behaviors may be frustrating to us, but they are not willful. The behaviors are as result of the disease process that is robbing them of their former abilities. Our loved one cannot express feelings or fears or frustrations as he or she did. Our role is to try to understand, and to respond with patience and compassion. Answering in a calm manner and a gentle voice will provide reassurance and support.
So, why do they act that way? They have not been given a choice. They are doing the best they can do. But we have choices in how we respond, and we can be kind.
What is Emotional Memory?
The most recognizable characteristic of dementia onset is a change in memory. Early dementia exhibits difficulties with word finding, remembering how to do familiar tasks, forgetting appointments and time schedules, and lacking awareness of taking medication or eating meals. The person may get lost trying to find a place that they have known well. Their appearance may change as a result of neglecting hygiene or forgetting how to dress appropriately. Losing items may provoke fear that they are being robbed. They may become more isolated as conversations become too overwhelming.
But one element of memory that seems to stay intact is the demented person’s Emotional Memory.
Emotional Memory provides a sensitivity to their caregiver’s feelings. A great deal of the caregiver’s feelings are conveyed nonverbally. A caregiver’s stress and frustration may be conveyed in a tone or volume of voice, posture, or impatience on the caregiver’s part.
Caregivers can be suffering from self-neglect in their taxing role of caregiving. So what strategies may be helpful?
An awareness of Emotional Memory in the loved one with dementia is a start. As a caregiver I can make efforts to keep my voice just loud enough to be heard, and try to use language that is easy to understand. I can use phrases that encourage, rather than criticize. I can be patient for my loved one to process what I say, and wait for replies even if that takes a while. I can repeat without shaming my loved one. I can structure my body language to convey gentleness and support.
In order to do this, caregivers cannot be running on fumes from providing more care than they are prepared to give. A caregiver needs respite from responsibilities and time to recover from the demands of caregiving.
You and I may not be providing care to someone with dementia right now, but we most likely know someone who is a caregiver. Those caregivers could use some encouragement. Providing a listening ear via a phone call, an offer to run errands, dropping off grocery items or a snack to a caregiver may give him or her the support needed to continue doing “the toughest job they will ever love”—providing care to someone they love who has dementia. I wonder how much impact it would have if every caregiver could feel supported and loved in these ways? I hope you will find an opportunity this month to deliver a supportive gesture to a caregiver. If you know of someone who could benefit from our support group, please email Pastor Shirley at firstname.lastname@example.org.
God’s blessings to you.
What causes Alzheimer’s?
Information from the Banner Alzheimer’s Institute says that the neurodegenerative disorder, Alzheimer’s, gradually becomes evident when abnormal deposits of proteins form hard plaques and tangles throughout the brain, causing neurons to die and the brain to shrink. The brain has begun the process years before any symptoms appear.
Alzheimer’s is the most common type of dementia, and there are some risk factors that may contribute including:
- Age. Most people diagnosed with Alzheimer’s are 65+ years of age. (Early onset Alzheimer’s occurs in the 40’s and 50’s but it is very rare.)
- Gender. More women than men have Alzheimer’s.
- Heredity. If you have a sibling or parent with Alzheimer’s your risk for developing it is slightly higher.
- Heart health. Older adults with coronary artery disease or peripheral arterial disease have higher risk.
- Chemical exposure. Toxic metals, pesticides and industrial chemicals may increase risk.
As research continues, it is now evident that some things are not risk factors and do not cause Alzheimer’s including aluminum, flu shots, silver fillings or Aspartame (sweetener.) These were suspected risk factors in the past, but Alzheimer’s is not caused by any of these.
Good self-care includes lifestyles that can help prevent Alzheimer’s as it promotes a healthy brain and body. Prevention measures include getting adequate exercise, eating a healthful diet, maintaining a healthy weight, and not smoking. In addition, Banner Alzheimer’s Institute suggests that you reduce stress, maintain social connections, stay active and engaged mentally, and get quality sleep.
Alzheimer’s in late life develops slowly. A sudden onset of cognitive or memory decline may be caused by one of several physical reasons and should be evaluated asap by doctors. These may include medication errors, malnutrition, dehydration, etc. Alzheimer’s is not detected by a single method and does not have a cure, however getting a diagnosis will provide resources to help with the journey.
If you are a caregiver to someone with Alzheimer’s or other dementia, remember that you are not alone. Our support group meets via Zoom on the first and third Monday of each month. Email Shirley for more information.
Dementia and Our Five Senses
While doing the complicated dance of being a caregiver to someone with dementia, we may not think much about the changes in our loved one’s senses and the affects of these changes.
An older person with dementia has a diminished sense of smell. Because of that, he may not realize that his cat’s litter box is full and is stinking up his house. She may not smell that a dishtowel was left on a hot surface and is ready to burst into flames.
Diminished sense of smell also diminishes the sense of taste. Food in the refrigerator may be kept too long and is no longer safe to eat, but someone with these sensory limitations may accidentally open the door to food poisoning. Due to the loss of taste, a person with dementia may be loading on salt, trying to find the satisfaction with something he can taste. It is a good idea to observe these things, and if you are helping to prepare food for your loved one, gently ask questions as you try different or additional herbs and seasonings to make food tastier without increasing salt (which can interfere with many medical situations.) These deficiencies often lead to a loss of appetite, and your loved one may lose interest in eating, leading to weight loss and weakness. A caregiver may have to be creative in providing many small “meals” per day with a variety of nutrients. Finger food may be preferred by your loved one. People with advanced dementia will frequently develop a heightened “sweet tooth” and while refusing most things, will eat an entire plate of cookies or carton of ice cream if it is available. A caregiver may need to limit the sweets on hand, if it is a problem, and only have small containers of sweets in the house.
Vision changes usually include cataracts and often macular degeneration (which limits central vision) or glaucoma (which limits peripheral vision.) Vision needs to be evaluated to be treated or corrected. Having adequately corrected vision not only means your loved one will be able to enjoy some of the things that require vision (TV, handwork, reading, etc.) but also is very important for safety. A person who cannot see is far more likely to fall. Mobility and confidence need vision. Before taking your loved one for a vision assessment, ask about the eye doctor’s experience with older patients with dementia and ask about the methods used to evaluate their vision. If you are not comfortable with the experience the eye doctor has had, explore other options.
The audiologist assessing hearing loss should also be well versed in assessing hearing acuity for people with dementia. Hearing loss starts early in life (by age 30) and usually changes slowly. Loss may be accelerated if your loved one has been in loud noise environments, or if there is a genetic hearing loss that is in one’s family. It is very typical for people to deny their hearing loss, even though it is very evident to others. Also, caregivers must be aware that it is challenging for someone (even without dementia) to adjust to hearing aids. He or she may have hearing aids in a drawer because the adjustment was unsuccessful, so they are never worn. The price of hearing aids is sobering as well. An audiologist should be willing to refund the cost of the hearing aids if the adjustment period is not successful, but there will be some cost for the fitting, hearing molds, etc. If your loved one is not willing or able to use hearing aids, the caregiver may need to alter the living environment to limit sounds that are distracting and confusing to a person with dementia. Background sound from TV, radio or even music may be overwhelming, and should be limited. Your loved one may benefit from headphones that will allow him or her to hear the TV without it blasting others in the home. The loss of one’s hearing is even more isolating than vision loss, because she or he cannot participate in conversations. In addition, definitive studies have shown that uncorrected hearing loss will exacerbate cognitive loss. These studies help to identify the importance of doing all that is possible to correct hearing loss.
Lastly is the sense of touch. It is often said that older people suffer from touch deprivation. I am afraid that in these days of Covid isolation, their touch deprivation has been multiplied. This is sad, because of all the senses, the sense of touch may be the best preserved. Seeing a baby or child, an older person will reach over to touch the soft, smooth skin. And with dementia, words may become confusing, but holding the hand of a loved one has unquestioned meaning. A person with dementia needs the reassurance of a touch, a hug, or a few minutes of quiet snuggling. Until we are safer from the threat of Covid, this will be challenging for some caregivers who are not able to physically visit their loved one.
Join us for our Zoom meetings on the first and third Monday of each month, from 10:30 to noon. Email Pastor Shirley for more information or for the Zoom link. Everyone who cares about a person with dementia is a caregiver. If you are aware of someone in this caregiver role, please pass the contact information to them. I look forward to seeing you on Zoom.
The Question Every Caregiver Needs to be Asking
There are so many challenges to being a caregiver. We want to provide care for someone we love, but there are days when the challenges are overwhelming. We ask ourselves “how did it get to be this way?” and we see no alternative to accepting the stressors that come with caregiving. Our role usually develops over time, and morphs from one we gladly take on, to one that feels nearly impossible.
But we may be forgetting the question that every caregiver needs to ask. That question is “Can you help me?”
We become so accustomed to doing everything that needs to be done, that we accept our level of exhaustion—both physical and emotional. Neglecting our own needs has become our new normal. We do not ask for help because we have grown to accept the level of involvement our loved one needs.
The other reason we may fail to ask this question is that asking for help is difficult. We gladly offer help to others without hesitation. Pre-pandemic we may have volunteered to help total strangers, as well as made ourselves available to help people in our communities and friendship circles. Yet there is a reluctance to ask for help for ourselves. This reluctance may set us up to block any possible sources of help to supplement our caregiving.
Help is available in both formal and informal ways.
Formal help may be hiring an agency to have a caregiver to provide some needed respite. Respite time may make it possible to have a medical appointment for ourself. We may have an opportunity to go to a store, or a hair appointment, or something else that has been on hold. A caregiver may want to use the respite time to relax and read a book, watch a TV show or even take a nap, knowing that everything will be taken care of for our loved one.
Informal help is asking for help from someone who is not a professional caregiver—a friend, family member, or a member of a social circle. Other family members may see what you do, but they do not realize that you need some help to do everything. They will likely be very willing to help if only they are asked to do so. It is so worthwhile to ask a family member to take your loved one to a routine medical appointment or to come and spend a couple of hours with your loved one. You may also want to think about what friend might be able to come and spend a couple of hours with your loved one to allow you some much needed time off. If you cannot feel comfortable with leaving your loved one, you may think about asking others to run those errands that have become problematic.
The most difficult part of these is to allow yourself to start thinking of ways you can be supported, either in formal or informal ways. And the hurdle that follows is to visualize and practice asking the question: Can you help me? Try it; it does become easier once we break this barrier.