The time after initial Lewy Body Dementia (LBD) diagnosis is so terribly fraught with emotions, fears, judging, confusion, denial and great sorrow that it’s tough to know what do do next. It may seem like a life sentence. And it is, so make the most of the life part of it!
A great responsibility will likely fall upon the care partner. It is a likely an incredible challenge: but by doing some things earlier — even though some issues may be very awkward or unpleasant — they’re critical, and will make life infinitely better in future, with fewer insurmountable problems. Not all are avoidable, but by doing as many of the points below as you can, your chances of having the best possible journey, under the circumstances, is vastly improved.
These Are Non-medical Priorities.
Above all, ensure that proficient, professional medical advice is sought and followed, from an experienced practioner. If you’re not getting good advice, or if you want a second opinion, actively pursue it. Finding the right specialist who is knowledgeable about Lewy Body Dementia is critical.
Ideally, these items should be done while your loved one is still cognitively able, but all items need to be addressed — in whatever way you can manage. Because of the speed of onset or delays in diagnosis, some aspects may have to be based on your knowledge of their overall wishes if they can’t now express them clearly.
Top 10 Priorities After Lewy Body Dementia Diagnosis
This list is directly influenced by a large group of LBD carers. The consensus of the community was to act fast, and do specific things first, so the list is prioritized accordingly.
- Actively advocate for your loved one.
Your wits and ingenuity will be critical to their quality of cognitive, emotional and physical life, and countless other areas. It is draining, but critical: both needed and noble.
- Find out what they want for care and quality/quantity of life.
Understand their wishes on future care, emergency measures, life support, do not resuscitate (DNR), placement in a facility or home ’til the end, etc. Spend time with them and become aware of what their ups-and-downs are like, and how they are changing and evolving: see if, or for how long, staying home is viable.
- Get Powers of Attorney, both for medical care and finances.
These are are two separate items. Have a trusted lawyer review all legal documents, and ensure all appropriate ones are complete, up to date and properly signed. Provide copies to hospitals, doctors, banks, so there will be no debating during a crisis.
- Rigorously assess finances.
See what state they are in, and find out who has access, where everything is. Be rigorous and vigilant: ensure that no scams, losses or mistakes can be perpetrated upon a vulnerable person with LBD. Get joint access to banking/financial accounts. This can be critical for quick action, and assess estate tax implications as well. Someone may need to become trustee sooner than expected.
- Be ultra careful with medications.
Make sure the right doses are taken at the right times. Ensure there is two weeks supply at all times. Keep careful track of what they take: names, dosages, times, when started, and for what. Check to ensure there are no bad interactions.
- Get a supportive specialist or Neurologist and parter with them.
Nurture the relationship. Be assertive and proactive: professionals often forget how different it is to care for a person with LBD 24/7, than to see them periodically in a clinical setting. Remind them what you need. Be honest. Get them to connect you with the best local resources for support, care, advice and community. Alzheimer’s and Parkinson’s chapters will be exceptional resources as well, and may provide local information.
- Keep your loved one and yourself socially engaged and physically active.
Spend time with them. Quickly establish and maintain a routine of socializing, and proactively pursue others to actually keep connected. Get involved in a day-program with a group on a similar path. Focus also on physical activity and continued mobility.
- Join and actively participate in a support group online or in person — ideally, both.
There is incredible wisdom in these groups that I have not seen anywhere else, and that far exceeds medical expertise in the daily realities of LBD caring.
- Keep learning and researching.
This is especially important once you have clarity about diagnosis. Ask your specialist for connections and resources locally.
- Remind yourself that you are stronger than you think, and that you can get through all this.
Take things one bit at a time. Be prepared for unpleasant surprises, but also joyous times. Caring for someone with Lewy Body Dementia is a transformational experience.
- Forgive. Be patient. With them, with yourself, and with everyone involved.
It is a hard, hard road. Everyone is trying their best, even if it may not appear so.
This list was built with consultations and feedback from many participants in an exceptional online community of Lewy Body Dementia care partners. Thank you to everyone for your thoughtful input, it has vastly improved this article.
The other articles on this website will provide insights that are critical early in the process, and have increasing importance as the condition evolves. A selection below focuses on the most critical elements facing someone newly diagnosed.
- Emergencies, Hospitals, and ER Visits: Fast Strategies
- Keep Track of Lewy to Make Better Decisions.
- Gradually Change Schedules, Routines & Times
- Top 12 Tips: Make The Most of Medical Appointments
- Hiring Paid Caregivers to Help With Lewy Body Dementia
- Walking Is Great For Lewy Body Dementia.
- Reduce Dementia-related Swallowing Problems. Avoid Aspiration.
- Avoid Falls Caused by Lewy Body Dementia!
- Stay Safe! Lewy Body Dementia Psychotic Episode Dangers.
Strength to you!
April 24, 2016.
Always seek and get the best medical help available.
The information here is no substitute for expert medical advice.
All information on this site is merely from personal perspectives and experience, not as a medical professional.
26 thoughts on “Top 10 Priorities After Lewy Body Dementia Diagnosis”
I really appreciate everyone’s help and information
My husband has Lewy body dementia. The information given has been most helpful. Thank you.
Very happy you found the information helpful, Marina!
Strength to you. Timothy Hudson
Comment sometime on when input from a close family member is meddling. For example one of my family members is calling the CCAC Manager on her own whereas I am talking with the manager all the time and reporting in. Is someone interfering with my integrity as a the prime carer? I find there are distortions from time to time, the line of communication gets fragmented.
Thank you for your information as being a new care partner in the journey it is so very important to find good factual information.
Glad it was of use, Sandy. There seems to be a fair bit of information about the condition, drugs, and so on — but it is like a tsunami when Lewy arrives, hits like a ton of bricks, and leaves every caregiver battered and confused initially, since we’re usually also trying to deal with all kinds of worrisome conditions and symptoms, and in most cases I know of, a person is often told by their doctor, “well, you’ve got Lewy Body Dementia, I’ll see you in six months, send in the next patient.” That leave one in a very difficult position, and with few places to turn. I’m delighted you came across this site, and I hope that it provides worthwhile information to you. It’s carefully curated, and if you’re on FaceBook, I suggest you “like” the Facebook.com/Lewy.ca page as well, which I update several times weekly with LBD-specific information. Strength to you! You’re a superhero, you know!
After diagnosis, I must admit we both went into a period of ” mourning” .
Trying to think of the road ahead. It was sad to say the least, especially, when you are told there is not a cure, but a slow road to a demise.
This list of 10 important things to do, well, we have actually done most, and try and keep positive. It is difficult , sometimes days are tough. Then a good day comes by. I worry, when he does something daft, ” when will that become the norm, or will he remember where the bathroom is? He wakes up most mornings now, & asks where we are, what hotel are we in? ( I chuckle to myself, oh, my I keep a good house!). ” No, darling we are home, look out the window, it’s our garden” It takes a few minutes for him to realise we are at home. Why does he think he is somewhere different? It is hard to get him to socialise now , even with close family, with more than 2 people, he cannot follow the conversation, and gets frustrated. So his way of coping is avoidance.
Oh, for a goodnights sleep! He has shocking nightmares!
Keep positive, be happy, seek the humour, and try and laugh, crying comes too easy these days, . . , strive for glee. I still love him, even if he is disappearing slowly.
There’s definitely a period of “mourning” after diagnosis, as you say, Jennie. Like the stages of grief, where some of the stages are re-visited repeatedly, too.
> I like your response to his question of “what hotel we are in.” You are very compassionate, and keeping your sense of humour is critical, which you seem to have done equally well with remaining adaptable. That is no easy feat. I know I was not the person I wished I was many, many times. The way I look at it, though, is that doing anything is better than nothing, and all carers are the real superheroes. You’re definitely doing everything wonderfully! Long may your striving for glee be rewarded. You will have no regrets, either. Strength to you! Timothy
So very very true. Married 60 years — so used to the way he was — but no longer. He’s in a nursing home now. With family visits most days. Such a cruel nasty disease
Horrible horrible brain disease
Glad to help wherever possible, Arlene. Thank you for your note. Much appreciated. Timothy.
Very sorry, Arlene. You are absolutely right that this is indeed such a cruel, nasty disease. The changes can be so very, very hard to accept and adapt to. I know you’ve adapted remarkably well, and almost-daily visits by you or your family is truly incredible. I hope that your husband does as well as he can, under the very difficult circumstances.
Strength to you, and to your family, and peace to your husband, Arlene.
Thank you for the wealth of information! I like the person before me heard,” Your mother has Lewy Body, will see you in 6 months”. The past 8 weeks my mother has taken a nose dive into the Lewy Body world of hallucinations and delusions. She is stricken daily with fear of someone trying to kill her and/or a loved one, believing I’m keeping her from my deceased father and a few dozen other reoccurring tormenting hallucinations and delusions. We are researching facilities…so very grateful for the article on “How to Choose a Dementia Care Facility”! I’ve made my list and will be “interviewing” each place I walk into. Even tho Lewy Body affects each person uniquely, in this Alzheimer’s/Dementia community, I feel like I’m finally finding “common ground”, practical advice and answers to questions amongst these pages. Blessings to you all!
Thanks for your kind words, Rhonda. It sounds like you are doing great things for your mother, and making the biggest difference possible for her, to be be as comfortable as can be, as calm and as happy as can be. And that is saying a great deal, even if you think you’re not having the success you would like, as do we all, you are nevertheless making an immeasurable difference. An immeasurable improvement. I definitely think you will continue to find more and more common ground with the dementia “community”, the last community anyone ever wanted to visit. I hope your mother’s delusions, hallucinations and paranoia diminish — one small, and mixed, blessing is that nothing with this condition lasts indefinitely, and I hope that your time witnessing and adapting to those will be as brief as possible.
Strength to you, Rhonda! Timothy Hudson.
My husband was just diagnosed last week. I have been in this complete mourning stage. My Son and I want to keep him at home and take care of him . We do not want him to go to a nursing home. Are we unrealistic to ourselves? Anyone ever care for their loved one at home until the end of life? I am scared of what’s down the road and how long this road is going to be. I will do everything I can to take care of him.
The week since your husband’s diagnosis must’ve been all over the map emotionally, for all your family, Phyllis. Very sorry for the shock.
> It is possible to keep many people with LBD at home to the very end. I personally know many, although it absolutely is not possible for everyone. Circumstances vary far too widely, both for the person with LBD, and the abilities and health of the carers, plus the costs, available subsidies, and the physical environment.
> Since this is your first week, you give yourself some time to absorb everything. The natural tendency is to go at light-speed to try and figure out every aspect instantly, to give one a sense of doing something. Anything. But the best thing is to research at a reasonable pace, get local information, allow yourself to absorb the overwhelming volume and disturbing nature of much of the info you will find. Take some time to filter it. Learning the simplest of meditation techniques, pausing to take a single breath or two, will also help you get through this.
> One thing people much wiser than myself have said, never promise anything specific, so you will not be so crushed if you have to change that later on. Things change. Especially with LBD. You may decide later, after finding an incredible facility with wonderful staff, that you can provide better care with their help, than from your home. Allow yourself variability.
> It is a hard road, but you will learn on this road about strengths you never knew you had. More strength to you.
My sister and I liken my moms LBD to a roller coaster ride… up up up in a good mood and knowing what’s happening pretty much. Then it might be 2 or 3 months and she will spiral down, down, down into a fretful anxious paranoid person who talks “off the wall” and obsesses about getting to the dentist or her handbag or who’s going to take her home. She lives in her own home as do I. Left my home and husband of 26 years to help care for her. She is an invalid with no balance or ability to take even a tiny step when we transfer her from wheelchair to commode or wheelchair to bed. We’re doing the best we know how for her.
That’s so very tough, Laura. You’re doing a very difficult thing for your mom, and I hope you’ll be able to manage things to keep your life with some semblance of balance while caring for her. I know that may seem impossible, but even little things can make a difference.
> Strength to you! Timothy Hudson
This page was a wonderful resource for me when I learned of my dad’s diagnosis of LBD. I too was scared of what was to come and had to also think of my mom’s ability to care for him. After a few months at home it became very clear that she couldn’t care for him on her own. I involved my family with all decisions and we decided it was best and safest to put my dad in a nursing home. It was a hard decision but I made sure my mom was able to see him everyday. He became very ill with all the other problems he had and was hospitalized a few times. After the last hospitalization we decided to involve hospice care. I am so grateful we chose this because he got so much extra care the last two months and they were so good to him. He slipped into his final days the first weekend of March. We all got to spend his last days with him, and we were all there when he took his last breath on March 5, 2018. Lewy Body is a horrible disease and it took from me the father I once knew. My grief is all consuming at times, but at least I know he is free from the suffering.
Very sorry for the loss of your father, Susan. It is indeed a horrible disease, but what a great thing you and your mom did for him! You were his angels. I’m glad you found the Lewy Body Dementia information beneficial. It sounds to me like you did absolutely everything right, and got the best possible outcomes, under the circumstances. May your all-consuming grief gradually lessen, and be replaced by happy memories of your dad as he really was, as the great father.
> Strength to you! Timothy Hudson
How old was ur dad when he died and how long did he live from diagnosis to when he passed? Thanks
My husband has been recently diagnosed with Lewy body dementia at 79. Our daughters and I have been sure of this for at least 8 months. Symptoms started about a year ago but the sleep symptoms of acting out dreams (hollering, punching, kicking,jumping out of bed) have been occurring for years. He is experiencing visual changes but normal eye exams. He is anxious about everything including what he looks like (had 60 pound weight loss), where we are going, what he will say to others, why did he get this, why can’t he sleep, etc. He absolutely refuses to have a stranger come into our home for respite. I have told him I will look after him at home as long as I’m able. Nothing “golden” about this horrible disease in our retirement years! Linda L.
Very sorry for what you’re experiencing, Linda. And yours is a tale that so many can relate to. In terms of the visual/sight aspect, I suspect his eyes are fine, it’s the interpretation and understanding of what’s seen, by the brain, that is the issue. This happened with my loved one as well. And as for those anxieties, and the immovability about bringing in extra help, that, too, is bordering on the universal, at some point, anyway. The way we were able to bring in extra help, was to “sell” it by saying it was for me, rather than for my loved one — she’d never agree to help for herself, but thought it’d be good if I got help, and that was the “foot in the door” which allowed us to hire the help we needed, describing them as friends, which they became, and quickly having them transition who they were caring for. Here’s hoping you’ll be able to find similar results, somehow.
Strength and courage to you, Timothy Hudson
Thank you. The different articles are very enlightening. I especially could relate to “showtime”. I’m sure some people think I’m exaggerating what’s going on!
Happy to help in any way possible, Linda. And you’re right — nobody would believe what the reality was, outside of “showtime” for us either, in many cases. But were they to spend a little longer, they’d get a much better picture.
Strength and courage to you! Timothy Hudson