One hardship for those with Alzheimer’s is a lack of understanding about this disease from those in the general public. Though it may hurt sometimes, to some extent this is understandable. We can’t all be expected to be knowledgeable about every disease, even more common ones. Typically, we forgive those who are important to us if they need a little education. But many Alzheimer’s sufferers and their caregivers are surprised to discover that many in the medical field, who do not work with memory care patients frequently, also do not have a good understanding of what Alzheimer’s is.
Imagine someone in the early stages of Alzheimer’s falls and breaks their hip, requiring a stay in the hospital. When the doctor interviews her and her son to learn about other medical conditions that may affect treatment, they mention that she has early Alzheimer’s. The doctor seems to ignore this information, which he fails to see as relating to the broken hip, especially since after a casual interaction he notices no cognitive impairment.
However, our patient quickly runs into problems. The doctor goes over instructions for her pain medication at a time when her son isn’t at the hospital, expecting that she will manage this on her own. The next time her son comes in, he finds her in extreme pain because she hasn’t taken the medicine on schedule. He points out this problem to the doctor. The hospital staff then goes to the other extreme, hovering over the patient excessively, speaking to her in slow loud voices, and even spoon-feeding her! Those with early Alzheimer’s know that this clearly is not the appropriate response either.
Unfortunately, the fact is that medical professionals just don’t receive adequate training on how to handle those with more mild cognitive impairments. They are able to address severe impairments, but the shades of gray in between just aren’t discussed. However, that’s cold comfort to early Alzheimer’s patients and their caregivers, who feel ignored and misunderstood by the system.
There’s no real answer to this problem for individual patients and families, since the issue is entrenched in our larger health care system. Hopefully in the future, all doctors, nurses, social workers, aides, and others will receive more refined training on how to deal with those with early Alzheimer’s and similar cognitive conditions. In the meantime, caregivers and patients should not assume that doctors and others will understand what they mean when they disclose early Alzheimer’s. Be specific about the kinds of communication you expect about the person’s treatment and how Alheimer’s will affect it.
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You’ve noticed some recent changes in your loved one. Up until recently, your dad was working at a job he enjoyed and intended to do until he couldn’t anymore. But then he had trouble keeping himself organized and he made the decision to move on. Now, your once-driven father seems to be doing not much of anything, withdrawing from all but his closest friends and family.
You suspect something is wrong, and know that Alzheimer’s disease or another form of dementia is a strong possibility. Should you act? If you do, what should you do next? Talk to dad? Talk to his doctor? And is there any point to pursing a diagnosis? You know that even medical experts can’t be completely sure someone has Alzheimer’s. Will the diagnosis only bring unnecessary pain and conflict to someone who only has a few years of life left?
Yes, it is true that diagnosing Alzheimer’s isn’t an exact science. No doctor knows without a doubt that a person has the disease: it can only be determined after death when the person’s brain can be examined for the plaque and tangles that characterize this illness. Furthermore, recent research has found that only about a third of Alzheimer’s diagnoses are completely correct. In another third of cases the evidence is murky and the last third are completely misdiagnosed!
But to put aside the issue of imperfect medical knowledge, even assuming one could know with certainty that they had Alzheimer’s, would they want to? Those who are labeled with the disease do often experience friends and family drifting away as they become uncomfortable. Illness is never an easy thing to witness, and for some people it’s just too much.
And beyond the isolation issue, accepting an Alzheimer’s diagnosis means accepting that one’s cognitive abilities, and quality of life, will be declining. Many prefer to put off facing this reality for as long as possible.
On the other hand, knowledge does bring power. For example, it may be useful to know that a loved one’s problems are NOT caused by Alzheimer’s or dementia, so that appropriate treatment can be pursued. It may be possible that your loved one’s condition can be easily remedied. The symptoms of a number of medical problems can be confused with Alzheimer’s: difficulty hearing, medication interactions, thyroid diseases, depression, heart problems, urinary tract infections, and diabetes. These concerns may be more treatable.
Finally, having an Alzheimer’s diagnosis can enable the patient and their family to plan more effectively for the future. It can prompt everyone to have a discussion about how the person wants to be cared for as they decline, while they are still able to have a meaningful conversation. It is also easier to make the appropriate legal, financial, and medical arrangements in the earlier stages of the disease. And finally, having a concrete reason for the behavior can be comforting to seniors and their loved ones. Otherwise, it’s all to easy for them to think that they’re “going crazy” or otherwise defective in some way.
There is a reasonable fear around seeking confirmation of suspicions of Alzheimer’s disease, but the disease itself is not going to go away. Many may find, as is often the case with fear, that the best way to escape it is to face it head on.
Physical therapy can do seniors with Parkinson’s disease a world of good, slowing the decline that these patients experience. The physical challenges that those with the disease face–slow movement, hesitation, balance issues, rigidity, and resting tremors–can severely impact their ability to complete everyday functions. A physical therapist should be able to design an exercise plan that can enable Parkinson’s patients to overcome these problems and achieve maximum mobility.
In addition to improving physical abilities, a physical therapist can also take a look at the senior’s home environment for potential safety problems and usability issues. Maybe there are throw rugs that should be removed, or grab bars in strategic places in the bathroom would be helpful. They can also give advice on what exercise is best given a senior’s particular medication, so that they can get the most benefit from their treatment. They will also send the senior home with a plan to continue treatment outside of the therapy setting.
One of the greatest benefits of physical therapy is that it can provide help with walking, which is a particular challenge for Parkinson’s patients. A good therapist will know how to overcome the “freezing” reaction that many patients experience. They may use an auditory cue, such as a ticking metronome, to prompt the patient to take steps, or visual reminders on the floor may help them remember how to walk in such a way that the chance for a fall is reduced.
Some physical therapists may incorporate tai chi, yoga, or pilates and can address rigidity and balance problems, as well as build strength. They can also help Parkinson’s patients determine whether a cane, a Rollator (a walker with wheels), or a similar device would be a good thing to obtain.
Consider physical therapists with BIG certification. These therapists have been trained to work specifically with Parkinson’s patients.
The recommendation used to be that Parkinson’s patients wait until the later stages of the disease to start physical therapy, but this is no longer the case. Instead, it is advised that patients start treatment as soon as possible, as this can have benefit before a major event like an injury or another type of decline. By building up these habits of physical activity now, they may be much better off as the disease progresses. If a loved one has Parkinson’s disease and there isn’t currently a physical therapist on their treatment team, take some steps to bring one aboard.
Many caregivers face the important question of whether to allow their loved one with Alzheimer’s disease to be given antipsychotic medications. The benefit of such drugs (like Abilify, Haldol, Zyprexa, Risperdal, and Seroquel) are that they reduce anxiousness, aggressive behavior, and agitation in those who have different forms of dementia. Almost all patients will experience these symptoms at some point, especially in the later stages of the disease. On the other hand, these medications come with some frightening side effects: incontinence, dizziness, confusion, and a hampered ability to speak or move, to name a few.
The medicine can help to make a caregiver’s job easier and reduce their stress. This is of course not a trivial concern: if their loved one is less agitated, a caregiver in turn may be able to provide better care.
However, adding one more pill to any senior’s drug regimine may cause unpredictable problems. The FDA warned in 2005 that the use of antipsychotic medications by those with Alzheimer’s and other forms of dementia may result in as much as double the chance of sudden death. Patients who are taking these drugs must be watched carefully.
If your loved one is already taking these drugs, though, you may not want to take them off. Researchers recommend that seniors who respond to Risperdal keep on taking the drug.
But as far as starting these medications go, the general policy is that they should only be used as a last resort. It’s estimated that in as many as two-thirds of cases, the use of these medicines is inappropriate. Use behavioral strategies to cope with anxiety and acting out instead. You may want to try giving simple acknowledgement to your loved one’s experiences, even if you know that they differ from what the rest of us would consider reality. Avoid correcting them or arguing with them. Or simply try to distract your loved one with an enjoyable activity.
Also consider that the aggression and anxiety that these medicines are supposed to treat is a sign that your loved one needs something that they’re not getting. Instead of providing them with that thing, the medicine simply masks the symptoms. One tip is to respond to the emotion, not to the behavior. Look underneath their actions.
Of course, the most important advice to consider when making any decision regarding antipsychotic drugs is that of your loved one’s doctor. They can help you weigh the pros and cons for your particular situation.
Many caregivers wonder whether or not they should tell their loved one about their Alzheimer’s diagnosis. This is not an easy decision to make. Often the best course of action is to let your loved one determine what you should say and not say.
At the time of initial diagnosis, early on in the disease, your loved one may know that they have some kind of problem and will have a lot of questions about what’s wrong. At this time, during the moments when they’re asking you directly, you should tell them that they have Alzheimer’s in an honest and straightforward manner. Your loved one’s doctor should help you with this task when breaking the news for the first time.
However, you will likely notice that over time your loved one forgets about the disease. Should you remind them? In most cases, no. Constant reminders and explanations can irritate them and often make situations worse. Even if they ask what is wrong, try to say just enough to put them at ease and try to be calm and gentle. For example, if dad tells you he needs to go to work, don’t tell him he quit once he was diagnosed with Alzheimer’s. Instead, simply remind him that he’s retired without going into the details why. Try to get them to refocus on positive memories or employ some other distraction to bring their mind someplace else.
This point may be challenging at times, but eventually your loved one will stop asking questions and become more accepting of their current situation. Trial and error will help you find the right approach for you and teach you ways to keep your loved one happy. Don’t let them feel frightened and alone, but don’t reopen old wounds about the diagnosis either. Consider using their own words for describing what’s happening. If they talk about “losing their memory,” use that as an explanation. Be flexible–if something’s not working, try something else. Watch your loved one’s reactions as you look for what gets results. Know that what works may change over time.
There is little to be gained from discussing the diagnosis: it is painful and confusing information. What matters more is how life is lived every day and the way forward. Sadly, there is nothing that can be done to reverse the disease. Focus instead on enjoying the remaining time with your loved one and on making them comfortable. As hard as it is to not be honest, kindness is important too.
Coconut oil as a possible treatment for Alzheimer’s disease has gotten a lot of attention recently. Advocates for this approach cite stories of folks whose symptoms have reversed and abated, even if just for a period of time. A frequently-told story is that of a Florida man suffering from early-onset Alzheimer’s. His wife began mixing coconut oil into his morning oatmeal, and he began to show improvement within days and complete tasks that had become too hard for him. Ten years later, the disease has progressed nowhere near as quickly as expected. Coconut oil advocates also point out that the disease occurs less often in cultures where coconut oil is used often. Are these claims valid, or is this just another crazy food fad?
There is a possible explanation for why coconut oil may help. As the disease advances, Alzheimer’s patients have trouble with using glucose as energy for the brain. Without fuel, brain cells die and cognitive function suffers. However, there is another substance that the brain can use for energy: ketone bodies, which are produced as byproducts when the body digests coconut oil.
That being said, as of now there is no scientific evidence that coconut oil does what its supporters claim. Formal clinical trials to investigate are just beginning, and the results should begin to come in a couple years from now. But in the meantime, speculation and individual experience are all we have.
But since coconut oil is just another food on the supermarket shelf, there’s no harm in trying it, right? This is true in part, but there’s another factor to consider with coconut oil: its high saturated fat content. The Food and Drug Administration has not confirmed any health benefits for coconut oil, but they do warn people to keep their saturated fat intake to a minimum. Those with high cholesterol or problems with heart disease should talk with their doctors before enjoying coconut oil frequently. If you do decide to try coconut oil, look for brands marked “virgin,” which will have no trans-fats or hydrogenated oils.
Do some research and consider the risks. Be careful of exaggerated claims you may see online: many of those singing the praises of coconut oil also happen to be selling it! Still, you may want to try adding coconut oil to your loved one’s diet slowly. This may be an area of research to keep an eye on.
Respect your elders! It’s a rule that’s been drilled into us from the time we were small. But how do you respect mom when she forgets your children’s names or wanders into a neighbor’s yard four houses down in the night? To make things even more complicated, now when your loved one’s abilities are declining is when they need your respect and patience the most.
The key is not to focus so much on their behavior now, but who they have been throughout their life and what their contribution to the world has been. Here are some tips for cultivating a more positive mindset.
- Remember that the world you experience is not the same one that they’re experiencing. Try to join them in their world. If dad seems to believe it’s 1943 again, follow him there. There’s no harm in indulging him for a few minutes, and it will help you better understand how he’s feeling.
- Don’t worry so much about perfect results. If Aunt Judy forgets that she’s already put on her lipstick or has been forgetting to water her plants, don’t fixate on it. Instead, just try to enjoy doing things and spending time together. It won’t kill either of you if you help her apply that third coat of fire-engine red. At least she’s having a good time!
- Don’t ask them to do too much. That’s just setting you both up for disappointment, and your loved one will likely become upset and overwhelmed. Give them something simple to do. Don’t go overboard with this, though, as treating your loved one like a child also won’t help.
- Let them do the things they are able to do. For example, mom may no longer be able to safely help you cut up vegetables for dinner, but maybe she can still assemble the salad once all the ingredients are ready. Let them have accomplishments, even if they’re small, and get them involved in everyday tasks.
- Don’t rush to get things done or to get to a particular place. Take the time to talk to your loved one and find out how they’re doing. This will go a long way towards helping them feel honored.
Wandering is a symptom of Alzheimer’s disease that many caregivers are familiar with. Your loved one wanders because they feel afraid, confused, and unsure of where they are. These incidents can be very stressful for caregivers and other family members. While you cannot completely stop this behavior, you can make your loved one more safe. Here are some tips for dealing with wandering.
Allow some space for wandering. Let your loved one satisfy their urge to explore safely. Set aside an area of your home or your yard where they can go without getting hurt. This may be enough to keep them from taking more dangerous trips.
Use signs. Signs with some sort of visual cue can help remind your loved one where they are. You may want to try a “Stop” sign on the front door to make it clear that they should go no further. Or put signs on the door to each room indicating what that room is for. You could put a picture of a blender at the entrance to the kitchen or a cartoon of a person sleeping in bed on the bedroom door.
Camouflage the exits. Your loved one can’t leave the house if they don’t know where the exits are. If your doors and your curtains are the same color as your walls, they’ll blend in and your loved one will have a harder time locating them.
Use locks and alarms designed to prevent wandering. There are many products out there designed to help caregivers address the issue of wandering. There are locks that you can install on entrances that are too complex for an Alzheimer sufferer to open. You can also buy alarms that sound when someone opens a door, steps on a mat, or enters a certain area.
Think about what causes the wandering. Is there some sort of pattern to your loved one’s behavior? Maybe they tend to wander at the same time each day? If that’s the case, figure out some way to eliminate the trigger or stop it from causing the unwanted behavior. If your loved one tends to wander at sundown, which is very common, come up with activities that will distract them during this time of day.
Talk to your neighbors. If your neighbors know that your loved one has a problem with wandering, they can help you be on the lookout. This way they’ll be more likely to call you as soon as they see them, rather than assume everything’s OK.
Even with normal aging, bathing becomes more difficult as we get older. However, the particular challenges of Alzheimer’s disease make this everyday ritual all the more nerve-wracking. If you’re finding it almost impossible to get mom or dad squeaky clean, read on for some advice.
First, consider why bathing has become more difficult. Does mom think she just showered an hour ago when in reality it’s been a couple days? Does dad not know what to do once he’s in the tub, and thus gets frustrated? Does your loved one not know what’s happening and become fearful once they’re all wet? Once you’ve figured out why they’re avoiding this activity, you can better address the problem.
If memory-related issues are the challenge, try to make taking a bath fun. For example, let mom know that you’ve planned an enjoyable outing where she’ll need to get dressed up, so that’s the reason why she needs to take a bath “again.”
If your loved one is fearful or uncomfortable when taking a bath, see what you can do to correct this. Turn up the heat if the room is too cold, or install grab bars so that your loved one can support themselves. Stools for the tub and hand-held shower heads are also popular with the elderly. As you help your loved one, go slowly and explain what you’re doing. The bath will be much less frightening for them if they know what’s coming next. If your loved one is very frightened at bath time, sponge baths may be your best bet. You may also want to purchase some dry shampoo so that you don’t have to get them in the bath as frequently.
Finally, consider whether your own expectations of cleanliness are part of the problem. Though the norm now in 2013 is to wash up daily, when your loved one was younger this wasn’t always the case. For example, in rural areas 75 years ago running water was a luxury, and many farm families took baths once per week. So keep in mind that your loved one may not be used to taking baths as often as you think they should, and that a bath every few days may make them a lot less stressed without causing much real harm.
Making bath time a comfortable and welcome experience for seniors with Alzheimer’s is a challenge, but with some adjustments it can become a manageable task.
An Alzheimer’s diagnosis challenges everyone in the patient’s family. Teenagers may sometimes seem to be wrapped up in their own worlds, but a grandparent who has Alzheimer’s disease can be very troubling for them and significantly affect their lives. Of course, it goes without saying that when a teenager’s parent is diagnosed with Alzheimer’s, it is all the more devastating. Teenagers are likely to need some help from older members of the family in understanding the disease and what they can do to cope.
First, reassure your teenager that the emotions that they’re going through – which may include fear, regret, confusion, and anger as well as sadness – are all normal responses. It may be helpful for them to hear that this will be a difficult time in the family, and for you to acknowledge that this experience is a hard one for them specifically. And of course, it may be good for them to know that they are far from being the only teen in the world dealing with a grandparent with Alzheimer’s, even if none of their friends have any experience with the disease. If there’s no support group in your area that they can turn to, you may want to point them to the website of AFA Teens, a branch of the Alzheimer’s Foundation of America. There they can find articles written just for them, a community message board where they can connect with other teens, and numerous other resources.
One of the most useful things you can do is to explain to your teenager how to communicate with their grandparent. The following are some tips you can pass along to them:
- Approach a person with Alzheimer’s from the front, so that they are aware someone is coming.
- Use their name to get their attention.
- Ask questions one by one, rather than giving them too much to think about at once.
- Maintain eye contact.
- Speak clearly and not too fast.
- Remember that if they forget your name, it says nothing about how much they love you. Just be patient and tell them who you are.
- Use a voice that is gentle and kind.
- Smile and use hand gestures and other body language. This sets a positive tone and makes you easier to understand.
- Help grandparents do some basic, manageable chores. The feeling of getting something done and being useful can be very therapeutic.
- Ask them questions about the distant past, for example: “What was your life like when you were my age?”
- Listen to your grandparent’s favorite music. This may also get them talking about the past.
- Go through family photo albums, especially older ones.
- Play a game together or work on a puzzle.
- Read them something that they might enjoy.