This article is for carers and family of loved ones newly diagnosed with Lewy Body Dementia. It might be a harrowing read for anyone at the early stages, and still reeling from the shell-shock of a new diagnosis.
My goal is to give you as many key points in a single piece as possible, and covers things I wish I had known early on.
I hope that having as much information as possible will make the journey a brighter one for all involved. Make sure you also review the Lewy Body Dementia information sources, videos and connect with other carers for support.
You’ve probably come to this website after visiting others, and so you likely already know that Lewy Body Dementia includes distortions of reality including seeing things that are not real (hallucinations) and false beliefs (delusions). It is also usually accompanied by the physical acting out of dreams (REM Sleep Behavioiur Disorder), Parkinson’s Disease elements including tremor, stiffness, and shuffling gait. In addition, there will likely be postural instability (leaning) and a high risk of falling backwards, among many other complex symptoms. I will cover the common elements, but will try to add many more, all of which are geared towards those who are providing care. This will help you to know what to look for, what to expect, what to nurture, and what to prevent.
I think this article is best read in its entirety, but if you just want information on a specific element, you can jump to individual sections below on:
> Duration, Phases and Stages
> Expect to Grieve The Living, and The Losses
> To Cope, Be Flexible
> Stay Active: Exercise Is Key!
> Life Is About Truly Meaningful Activities
> The Best Medicine: Positivity
> Avoid Falls: They Are Instant Catastrophe.
> Avoid Anti-psychotic Medications!
> Hospitals and Visits To Emergency: What To Know and Do
> What If I Don’t Think It Is Lewy Body Dementia?
> Is There Anything To Hope For?
> You Are Stronger Than You Think You Are
> Beware of “Showtime”: Temporary Normalcy In Social Situations
> ….More Information Is Coming
Duration, Phases and Stages of Lewy Body Dementia.
A diagnosis of Dementia with Lewy Bodies will change your world. It will reshape all relationships, and test you in ways you likely never imagined. But you are more resilient than you likely think. If you’re looking into this now, I hope you’ll see there is reason for hope that will counter some of the despair that can mercilessly assault you as the condition progresses.
Any degenerative disease is a life sentence, but with Lewy Body Dementia, it has an indeterminate duration, and its course will differ for each sufferer. I know some people who have suffered rapid progression with precipitous declines, and others who have had years of relative stability. People also rally in many cases from what seem to be devastating setbacks. I have seen what appear to be miraculous recoveries; and others where the “recovery” means more that it is slightly up from the pit, and creates a new “normal.”
Our specialist in Geriatric Psychiatry said that the “average” duration from diagnosis to passing is 2-7 years. Whoa! Nevertheless, there certainly is still hope. Our loved one was diagnosed in 2008, when she was 79 years of age, and she maintained remarkably good condition physically and cognitively until she contracted an aggressive pneumonia and died a few days later in August 2016. She was not in fabulous condition, but “remarkable under the circumstances” as our Geriatric Psychiatrist said. But all will have different progressions, and we were fortunate to have had a slower one than many.
The “phases” and “stages” of Lewy Body Dementia are frequently referred to. Very, very little benefit or clarity will be gained by trying to apply linear benchmarks. The condition is too fluid and variable. Applying stages will likely be almost completely inaccurate, indeterminate, and irrelevant, at least until the so-called “final stages”. LBD, by definition, has wildly fluctuating levels of cognition, memory, behaviours, physical ability — so what may seem like a mid-phase one moment may seem either like early-stage at another moment, or late stage at another time…all in the same day. It’s likely best to avoid reading too much into any of the so-called stages or phases: the progress of the condition will be repeatedly marked by unexpected moves forwards, backwards and sideways. Be prepared for surprises.
In the mid 2000’s, a group of well-organized carers assembled what I consider to be the best guidelines to the progression of LBD, primarily because it conveys the continuum and fluctuations of the condition, its non-linear aspect. I’ve slightly reworked it for use here, and you may find their exceptional guide to the phases and stages of Lewy Body Dementia illuminating.
Grieving The Living and Grieving The Losses.
The diagnosis will likely cause you to experience the five stages of grief: denial, anger, bargaining, depression and acceptance. This is completely natural. The sooner you can get to the final stage, acceptance, the better it will be — for all involved. As setbacks occur with declines caused by the disease, you may move back into earlier stages of grief, since you will likely grieve each subsequent loss of ability. Completely natural. You are not unique in this.
In addition, you will likely experience “Ambiguous Loss” where your loved one is still physically present, but their “old self” will be missing at the same time as they eventually become someone very different than they were. Ambiguous Loss is frequently experienced by the families of missing persons, soldiers missing in action, persons in a coma, and others. This is because they do not have closure with the knowledge that they are truly gone, nor do they have a possibility for a reunion. The “ambiguous” aspect is the ambiguity of the loss not having closure. The key is to be able to accept the ambiguity, such as “they are present, but they are not here”, or “here in body, but not in mind.” It may sound simple, but it is not easy.
The grieving process is normal and natural and is common to all forms of dementia, as well as many other grievous medical conditions. And it will likely return as you encounter new setbacks and challenges. This, too, is completely normal and natural.
Be Flexible, Accept Reality and Changes.
Prepare yourself for changes. Big changes — but hopefully not too soon. In the meantime, make sure you, yourself, are able to change. Being flexible has been the most significant key to accepting what’s going on. No preconceptions can be harboured: you need to be able to witness what is happening, and adjust everything relating to things as they really are.
My experience has been that conflicts about reality with my own loved one, and between other family members has led to the biggest difficulties. It’s caused resentment between carers and confusion and upset with our loved one. It also made me less able to accept what her remaining strengths were, and make the most of them, and make her as happy as possible.
The changes keep coming, and the grand fluctuations as well. So your ability to accept change and the see-saw of behaviours will thoroughly test your flexibility. Accept that this is going to be hard. Very hard. But have confidence that you are resilient and will be able to do things you never expected you could.
Exercise and Activity Is Imperitive.
Anyone with Lewy Body Dementia needs exercise, compassionate interaction, and meaningful activity. Quality of life is probably your top goal, and those are ways to make the biggest difference.
Exercise for our loved one with Lewy Body Dementia has likely been the single most critical element to slowing her physical decline in my view. This means physically holding her for walking at all times, while she uses a rollator/walker. This has been continuing for years. It takes significant commitment to do this. Do not underestimate this responsibility, because the likelihood of falls from postural instability is almost universal.
Stretching and resistance exercises are also critical, and can be done simply and at no cost. Motivation may be at a very low point, and your participation will enable your loved one to boost that motivation. Your help will also increase safety.
Have a look at a full article on how to ensure your loved one walks safely, long after diagnosis of Lewy Body Dementia.
Meaningful Activities for Someone With Lewy Body Dementia.
Meaningful activities with Lewy Body Dementia become difficult to maintain. Try to have your loved one do things that have the smallest chance for “failure.” Dementia is debilitating, and adding the additional awareness that it is something that should be easy but is impossible, can add to the weight of loss. The simplest, most routine things may need cues, hints or help to complete, but often those routine things may be the most comforting. Sorting tools, setting a table, drying dishes, folding clothes, baking or helping with meal preparation are all possibilities, although your help and guidance may be needed.
Be creative, test out what works, and try new things. Keep in mind that their abilities will likely vary greatly day-to-day, and hour to hour, so what they can do at one time may be impossible a moment later. Remember, too, that the reverse is also true — sometimes they will amaze you at their ability level, so don’t always assume it’s all gone.
The Best Medicine: Positivity
There is no cure for Dementia with Lewy Bodies. Nevertheless, your own attitude has the potential to dramatically lessen the traumas, terrors and the tragedies. For all the advancements in science, the very best medicine may still just be positivity: there are no negative side effects, either.
Positivity may seem impossible to summon when there are so many heartbreaking challenges in your world of Lewy. But any optimism you can find will provide returns to you, your health, and to your loved one. It is not possible to be happy in these circumstances, but it is possible to be happier. And even if you can only conjure a weakly joyous heart and a smile, even rarely, do it. You won’t regret it.
In whatever ways you can, nurture and grow all the positivity you can within yourself. It is contagious, and hugely powerful.
Having a positive outlook is exceptionally simple, but not easy: it’s very, very difficult. If Lewy is running wild, it will be close to impossible. But if you can remind yourself, repeatedly, that your own attitude will impact that of your loved one, you will get lasting, positive effects.
Here’s how it works for me. Every time I am about to enter Lewy-land, I stop on the threshold briefly, take a couple of deep breaths, and remind myself of two things: to completely dispense with expectations of what is going to be going on inside, and to be as positive as possible. Those two things are often the only things that can make any difference at all. It makes whatever I find beyond the door much less catastrophic for me, and all those I encounter. Cultivating positivity and acceptance has helped me deal with the countless losses of Lewy in much better, and more productive ways than I did previously. I am better for it, as is everyone I encounter.
Avoid Falls. Instant Catastrophe.
One way to avoid trips to the hospital is to prevent your loved one from falling. This is no easy task, but making as many precautions to limit risks is very, very worthwhile. Usually this will mean manually assisting your loved one when standing or walking much, if not all, of the time. Grab bars and rollators are fine, but in a confused moment, how they are used is forgotten. Use them regardless. Fewer hard surfaces, more soft things to break a potential fall, and good lighting can help significantly. Be vigilant about your loved one’s current state, which will change: if they are tired, agitated or confused, they’re more likely to fall so you may have to keep an extra careful eye on them at those times.
This is a big issue, and for more information read the full article on dementia-related balance and vision issues and how to avoid falls.
It is a huge commitment to prevent someone with Lewy Body Dementia from falling. But in many cases, it may warrant the incredible effort when you weigh that against the downside of breaks, hospitals, delirium, and other complications.
Avoid Antipsychotic Medications!
The Lewy Body Dementia Association said it succinctly: up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity. This can include worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal, with severe fever, muscle rigidity and breakdown that can lead to kidney failure.
In any hospital visit, in a crisis situation, a grievous mistake can be made unintentionally. Make sure that the staff and doctors are familiar with this critical information — if you tell them that NMS can be induced, they are likely to pay attention.
Hospital and Emergency Department Visits
Trips to the Emergency department are pretty much inevitable in life. With Lewy Body Dementia, it’s magnified.
Consider the risks and benefits of going to the hospital before committing to it. We’ve found that whatever legitimately led us to go to the hospital has — most frequently — been an anomaly, impossible to diagnose or treat, or one of the countless Lewy fluctuations. And since there is usually such a precipitous decline caused by an ER visit, even one of only a few hours, we now err more towards keeping our loved one at home and carefully monitoring the situation, rather than calling the ambulance. But ER trips still happen.
Medications can easily be missed while you wait, or while you’re in ER, so make sure you bring at least a days-worth with you. The fewer meds missed, the better the outcome will likely be. Know the specific doses and times for everything. A nurse or doctor will likely have to approve what is to be taken, so check with them first, but if you have the meds with you, it’ll likely reduce the skipped doses. And even if they won’t let the medications be taken in the hospital, having them with you will allow you to administer them as soon as you walk out the door when you’re discharged. The more you keep on schedule with meds, the better things will be.
Whatever you can do to keep your loved one “present” while in hospital, and reassured, the better the outcome will likely be. Ours is extremely susceptible to Hospital Induced Delirium, which adds a new level of difficulty to the experience. The more she has comfort and is able to rest, the better she seems to do.
What If It Is Not Lewy Body Dementia?
If you have a diagnosis from a qualified specialist, a misdiagnosis would be extremely rare. I have never heard of one, personally. This is probably because it is still such a lesser-known condition that if one is diagnosed with it, it is probably because you have been fortunate enough to find someone who is well informed. You can get a good idea if Lewy Bodies are present using a simple checklist as well.
The risk of being in denial of this diagnosis has two primary issues. Firstly, the quality of life for the sufferer may not be maximized. Research has shown that early diagnosis and treatment can slow the progress of the disease. It won’t stop it, but anything to slow it is welcome. The second issue is the potential to be prescribed medications which are harmful or life-threatening, particularly anti-psychotics. Neuroleptic Sensitivity to anti-psychotics should be avoided at all costs for someone with Lewy Body Dementia.
Is There Any Hope?
Hope springs eternal, but with a long, slow decline, that wellspring of hope can become more of a trickle than a geyser. Or go completely dry at times. These hopeless spells should not be all the time. You will need to stay as healthy as you can to maintain your own hope, and to keep the spirits of your loved one high. If all hope is completely lost, you need more help for yourself to continue helping your loved one.
Lewy Body Dementia medications also provide some significant benefit. Different types of drugs can usually help for movement and tremors, hallucinations and delusions, sleep disturbances, memory and cognition, etc. There is some evidence of miracle drugs in the development and testing phases, but I wouldn’t count on those being available anytime soon. In the meantime, get the best specialists you can, and advocate actively on behalf of your loved one for the best treatment possible.
Knowing that you are doing your best will kindle your spirits as well. You should be proud of yourself, your honest and steadfast commitment. Few do this, so you are part of a very special elite: a Superhero! You are stronger than you likely think, and despite setbacks and endless trials, you will weather this storm with irrepressible strength.
You Are Stronger Than You Think
This is a traumatic condition. There will be no shortage of heartbreak and horrors. It will sap your energy, happiness, freedom and hope. However, it will also test your mettle, and your ingenuity, your tenacity and your commitment. But you will likely be surprised at how you perform. Strength comes from unexpected sources, from unexpected people, and from within yourself in ways you likely never thought possible. And as the journey continues, you will be able to look back on things that seemed absolutely devastating and unsurmountable, only to say “I made it through that, after all.” Hopefully, that will give you the confidence to continue, knowing that your success rate in dealing with the heartbreak and horror has been surprisingly good.
Certainly, I never expected I could grow and learn what was needed to provide the assistance I have. It has required significant sacrifice, and of a type many would not be willing to make. But I am convinced that I have done the right thing, that I will not regret my choices, and that it is truly the right thing to do, and for the right reasons.
Not everyone is up to the task of being a care partner. But just because some are not, doesn’t mean that you are any less likely to step up and become a heroic figure, able to make a monumental and profound difference in someones life. Try your best, recognize you will fail, but know that whatever it is that you do is meaningful, worthwhile, helpful, just and powerful.
Beware of “Showtime”: Temporary Normalcy In Social Situations
Many people with Lewy Body Dementia retain a distinct ability to socially interact in unusual or novel situations at a level significantly higher than their normal state. They may be completely unintelligible in their own home, with their regular care partner, even abusive, or catatonic, or with terrifying hallucinations and delusions during all their waking hours, yet still be able to revert to a much earlier stage and interact with strangers in a normal, or almost normal manner. This is generally referred to as “showtime”, because it appears that they can act like an academy award recipient in some situations.
This can be disconcerting, difficult to deal with, and present completely false impressions. Showtime can make it seem like you are exaggerating their status, or that you’re outright lying about it, or that the caregiver is “bringing out the bad behaviour”, and if you weren’t around, your loved one would be fine. Another potential result can be that you may be sloughed off by medical specialists if they do not exhibit any of their normal oddities when at the appointment, only to revert right back — with a vengeance — once they’re back in their normal environment. Their diagnosis may then be completely inaccurate, and your loved one could miss out on treatment and medications that may be crucial for them, and for your ability to continue caring for them.
Showtime also can make you doubt yourself, as a caregiver. This should never be downplayed or minimized. Your ability to care for someone is significantly impacted by their reaction to you. Caregivers need to remind themselves that the LBD damaged mind enables things that could be done by virtually no other disease-impacted person. This is not the person, it’s the disease. Nevertheless, it is difficult not to doubt ones own abilities and affect on a person when they behave significantly better when with others, than with their core carer.
Another problem after a Showtime episode is that there will frequently be a significant downturn, where a person with LBD will “crash” and be extremely drained, and may have very extended sleep, disorientation, anxiety, confusion, delusions, and hallucinations for a day or more afterwards. I have not found a reliable explanation for this, but it certainly seems to be common, and consistent.
Being aware of the potential of Showtime can help you deal with it. It may encourage you to video-record difficult or worrisome behaviours so you can show them to your medical professionals, instead of them thinking your loved one is doing well, when in the midst of showtime. It may also allow you to engage in periodic social events, and have successful ones, under certain circumstances — generally not too big, not too stimulating or loud, and not very long. Maintaining social connections is important, and hopefully you will be able to continue them.
More Information to Come…
I will be adding to this page with several other items, and will likely expand upon several of them in individual posts elsewhere on this site. I wish I had been given a clearer understanding of key elements when our loved one was first diagnosed. So, even though this is not perfect yet, I hope that it will be of use and will spur you on to find even more information for your specific needs from the many online and in-person resources that are available.
Strength to you!
Updated May 7, 2017