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!

Top 10 priorities after Lewy Body Dementia Diagnosis -- Info/graphicA 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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Keep learning and researching.
    This is especially important once you have clarity about diagnosis. Ask your specialist for connections and resources locally.
  10. 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.
  11. 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.

Strength to you!
Timothy Hudson

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.

Top 10 Priorities After Lewy Body Dementia Diagnosis

13 thoughts on “Top 10 Priorities After Lewy Body Dementia Diagnosis

  • April 30, 2016 at 5:24 pm
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    I really appreciate everyone’s help and information

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  • April 30, 2016 at 8:33 pm
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    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.

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  • July 10, 2017 at 4:54 pm
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    Thank you for your information as being a new care partner in the journey it is so very important to find good factual information.

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    • July 10, 2017 at 5:15 pm
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      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!

      Reply
  • July 11, 2017 at 1:48 am
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    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.

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    • July 11, 2017 at 4:46 pm
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      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

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    • August 6, 2017 at 8:08 am
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      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

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        • August 7, 2017 at 6:23 pm
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          Glad to help wherever possible, Arlene. Thank you for your note. Much appreciated. Timothy.

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      • August 7, 2017 at 6:23 pm
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        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.
        Timothy Hudson.

        Reply
  • July 18, 2017 at 12:17 am
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    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!

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    • July 18, 2017 at 12:39 am
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      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.

      Reply

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