Mark’s Comments on the Phases of Lewy Body Dementia

Mark Haverly submitted this comment on 2009/02/16 at 9:17pm. I found it quite helpful to me as a rough guideline. As he states, it is no way based on research or science.

Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, “To be forewarned is to be forearmed.”
The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are “high-functioning” may also show symptoms of Phase III or IV. By no means will a patient display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.
Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny
· Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking)
· Increased daytime sleep – two+ hours
· Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems
· Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean)
· Chronic runny nose
· Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness
· Short-term memory loss but able to hide (mask) symptoms or engage in show time
· Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression
· Able to engage independently in leisure activities
· Handwriting is affected; impaired ability to handle financial responsibilities
· Still may be able to work but driving skills often compromised
Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
· Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance
· Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation
· Parkinson’s symptoms may be controlled with medication
· Increased difficulty in:
Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances
· May be able to administer own medications.
· Able to follow content of most conversations
· Able to be left unsupervised for two or more hours
· Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated
Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.
· Ambulation/transfers are impaired, needs assistance with some portion of movement
· At risk for falls; increase of Parkinsonism symptoms
· Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week)
· Needs assistance/supervision with most ADLs; may require DME
· Speech becomes impaired, projection (volume) may decrease
· Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language
· Able to be left unsupervised less than one hour but unable to work or drive
· Unable to administer medication without supervision
· Unable to organize or participate in leisure activities
· Inability to tell time or comprehend time passing
· Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome
· Severity of symptoms may increase or decrease
Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.
· Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair
· Needs assistance with all ADLs; requires 24-hour supervision
· Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel
· Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses
· Parkinson’s symptoms need regular medical monitoring
· Choking, difficulty swallowing (dysphagia), aspiration, excessive drooling
· Increased daytime sleeping
· Hallucinations prevalent but less troublesome
Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.
· Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning
· High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever
· Difficulty swallowing with possible decision for feeding tube necessary
· Muscle contractions – hands, legs, arms; lean to either side very pronounced
· May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
· Unable to follow simple commands; decreased or no language skills
· Constant delusions
· Fluctuations less frequent and more severe
May you find peace and comfort in knowing you are not alone.
Jan Colello
ADL Activities of Daily Living – dressing/bathing/ feeding oneself
BP Blood Pressure
CG Caregiver
DME Durable Medical Equipment–wheel chair, shower chair
DPOA Durable Power of Attorney
LBD Lewy Body Dementia
LO Loved One
LW Living Will
MPOA Medical Power of Attorney
PCP Primary Care Physician
POA Power of Attorney
REM Rapid Eye Movement sleep disorder
URI Upper Respiratory Infection
UTI Urinary Tract Infection
WCh Wheelchair


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30 Responses

  1. I was in the middle of research about LBD and aspiration, so just did a quick scan of your piece. One error I noted was the substitution of the word dysphasia for dysphagia.
    Dysphasia is a language disorder.
    Dysphagia is a swallowing disorder.
    Thanks for asking.

  2. I thought that the site is excellent! – What an exact description of the symptoms by Mark Haverley. My husband has LBD & has been on a puree diet for 1-1/2years. One month ago, The autonomic system dysfunction caused him to have a 101.4C Temp.and 187/118 B.P by the time I got him to the Hosp.Emergency. He had a Rigor Tremor- He aspirated, but x-ray showed no sign of pneumonia. He was put on a Bacterial anti-biotic Avelox & observed with a 2nd x-ray – Fortunately, he came through that episode. He is not going for walks as previously because of lethargy – and is more difficult to get up in the mornings. I continually monitor his B.P. and Temperature now!. With orthostatic hypotensiion, he has fallen many times. — and, I could go on and on., I did want to make a particular point in the hopes that others may be helped. There was a point in the last year that he lost l8 pounds during which period he had problems with his bowels. All tests proved negative & it was decided that is was another symptom of LBD.. I ran out during that time and bought Ensure. It was to no avail. Perhaps it helped with lost nutrients however it never did do a thing for the weight loss. I bought a Jar of ‘Quick Mass’ from the Health Store, and asked the specialist for Lewy Body Disease if I could give it to my husband The Doctor said, Absolutely!. It helps to gain lean body mass- enhance nutrient uptake- and increase calorie activation– It also has Essential Amino Acids. The Specialist agreed. My husband gained his weight back, and now takes a Maintenance Dose Daily! — I mix it in milk, and thicken the drink with Simply Thick & at times also turn it into a fruit smoothie. My husband feels better, he says when he takes it Bless each of you who have LBD or who are a Caregiver for your Loved One! –Thanks so much for the opportunity to respond. Joan Norgaard

    • Thanks for your note. My hubby is still able to eat, has lost weight, but likes his Klondike Bars, and tuna sandwiches. I’m not a crowd joiner so I don’t go to meetings. I know what is going on. Sometimes I just need a shoulder which I get from my family. He just sleeps so much. I do push him but then he gets extra tired. Doc said leave him alone – I’m just not ready to give up yet. He still has will….take care and keep posted.

  3. I keep going back to this site. I think we are at Stage 3 getting ready to go to 4. My husband. 67. This has been so hard. We both retired 3 years ago. Wanted to travel. Tried, but too hard for me as he can’t really help anymore. It is so hard to watch the man who could do and be everything reduced to trying to remember how to use the toilet. My grieving started a while ago but am hanging in. He still likes to go to the grocery store, Walmart, and take a nice long ride. He just sleeps so much. 12 hours at night and then nap during the day. We tried (with his agreement) to force him up after 10 hours – get dressed and go out….it worked great that day – but he was completely whipped the next day. Thanks for having something out there that does not read like a text book.

  4. My mother has this dreaded disease, my dad tried to care for her as long as possible. It almost killed him, I took over two months ago when he had a triple bypass, and an aorta anuerism. This stress caused a decline so severe in my mom that she has been hospitalized twice in two months with aggression so severe that several people have been hurt. I wish I had obtained my M.D. instead of my Ph.D. so I could prescribe morphine and provide palletive care, she is suffering so much I want it to be over for her. She is on clozaril which has really dangerous side effects, I finally allowed it to be prescribed in the hopes that it would be a blessing in disguise for her. Right now she is currently strapped to a hospital bed with a face shield over her face. This is not how any of us envisioned her last days.

    • So sad to see your comments. Must be very difficult to say the least. We are having some rough times but thus far, he is still a gentle person. God be with all of you.

      • Well thank you, I let my heart rule instead of my head, I persevere because that is how she raised me. I am happy to report that she is currently on a new medication. My father can still not care for her, but she is in a new nursing home and doing well. She will spend Thanksgiving with us tomorrow.

        • I agree with heart over head. Taking day at a time. I’m glad you found a solution that hopefully works for all of you. Can you tell me the meds she is using. My hubby is on Aricept23 (for years) and the doc wants to switch to Exelon. Do you have any exeperience with either. I’m afraid to change yet don’t want to ignore something that might help. Have a wonderful Thanksgiving and enjoy the family.

          • She was on the Excelon patch and Aricept at the same time, she is now on Seroquel. That’s it.

  5. Because I am a Naturopath I wanted natural treatment for my spouse, so I had to do it myself. He is still very calm and has no side effects from anything he is taking so will continue as long as it works. The hallucinations remain benign and do not bother him, only stir his interest. The night time wandering and confusion are disturbing and not possible to prevent. The distress at watching someone with a first in pure and applied maths deteriorate in this way is overwhelming at times overwhelming. He sleeps a good deal during the day and waking is a stressful time when he is confused and liable to fall due to low blood pressure. My prayer is that he will sleep away before he gets much worse. Blessings to all of you who struggle with this accursed illness.

    • I am so sorry for what you are going through. I did for the last 2 years and he passed on 3/11. The only thing that finally got us through the nights was remeron. I don’t like drugs but this gave him 10 hours of sleep every night and gave me some rest at the same time. God bless you for all that you have gone through and will go through. I cherish all those who gave me moral support and shared their stories.

    • My Dad was diagnosed a year ago with LDB. He is doing much better since his diagnosis which led him to a complex care nursing home which has greatly improved his quality of life. He also has REM sleep disorder. Medication was unable to help so I bought him a 10,000 lux white/clear light therapy lamp. He has been sleeping through the night for 7 mths now. Just wanted to share a natural remedy as LBD is highly sensitive to meds.

  6. Fyi – my hubby passed 3/11 from Lewy Body. Very sad and very hard. He is in a better place. Peace be with all of you who are having to go through this.

    • Rosalie,

      Please accept my condolence. You are in my prayers!


  7. bless all who share for new care givers

  8. Struggling daily with my Father’s LBD diagnosis. It’s comforting in some ways knowing it’s not just my family. Of course, I wish none of us had this horrible disease rob us of our love ones. My Father’s stage seems to be the later stage. The doctor’s tend to agree, even though it’s only been a year we received the LBD diagnosis. Before that he had mini-strokes and his Medical Family doctor said Dementia. I pursed seeing a neurologist and he immediately recognized it to be LBD. His worst symptoms a year ago before seeing the neuro doc was hallucinations, paranoid, and delusions. Now, the Parkinson has taken presence and he’s miserable. Barely speaks, drools a lot, loss of appetite.and will to live. He was the most amazing man to me and I miss that person so much. We rode horses, he rode motorcycles and worked until we stopped him. He was in business for himself always wheeling & dealing. We chose to keep him home, against the doctor’s recommendations. It’s exhausting primarily for my Mother but me and my siblings are all on board with helping her. God Bless each of you that are affected by LBD.

    • So sorry for what you are going throug. My hubby had it diagnosed for about 6-8 years. The hardest part for him through most of it were the hallucinations – very many of them all the time – none of them scary just bothersome. We did pretty good till this last year. Then, like you say, the eating, the pain from the Parkinson’s, inability to process simple directions. He died 3/2013. What is so sad for all dementia and alzheimer’s victims, is that they were usually full of life, loved to live. To watch the decline is truly heartbreaking. My prayers and thoughts are with you. (P.S. In the end Hospice was a God-send and helped me survive.)

    • Hi, since posting in April 2013 my dear Daddy won the battle and The Lord called him home May 8th. The end was worse than ever imagined. Now, 4 months later, I miss him so and have horrible memories of LBD. The disease is wicked and cruel!

      • So very sorry for your loss. Yes, it is a terrible end. That is why, in my mind, it takes a little longer to deal with the grief…how it ended. If there is any good in this disease compared to Alzheimers or other related illness, is that the end does seem to come quickly once it deteriorates…..weeks instead of years. Somehow I look to all the tragedies in the world and it helps me to find some peace in my life. I have to tell myself each day to “suck it up” and find a way to contribute to someone else’s life through volunteering which I have done. It is hard but it has helped. Good luck to you – you are in my prayers as well.

        • Hi Rosie…i had lived with my mom for my entire life…there were times she told me to move because she didn’t want me there; she would call me by my sister’s name; and sometimes when I was talking she would get all wide eyed and tell me not to say that again…looking like I was going to kill her. At that time I did not know that she had LBD. I had to take her to the local Geri/Psych unit for evaluation and they put her on Risperadol until I could take her to the new center for memory and aging…by the time that we got the diagnosis she was already exhibiting some signs that the risperadol was not good for her;She was diagnosed in Feb 2008; went to the hospital for urinary problems twice in March and at the end of March the doctor told me that she was in the dying process. I brought her home and hospice. I didn’t want to lose her so soon, but now I thank God for His mercy in taking her then and sparing her the LBD problems that were yet to come. She passed away on April 13, 2008 and on October 13, 2008, I contacted LBDA to volunteer. I now am the LBD Caregiver Support Group facilitator for the Las Vegas area and I also take my two Chihuahuas to a local skilled nursing facility to brighten the lives of those that are housed there.

          • Yes, a hard loss. I so give your credit for your volunteer services. I know the need is there and I truly respect and admire those who can volunteer and give support in the dying process. I wish I could, I just can’t. I try to give in another way. However, without the help of those like you, I never would have made it through the end or the new beginning. God Bless you and those that you continue to help.

  9. My husband has LBD and was diagnosed is January. We suspected it but had it confirmed. He has the cap gras and it was very sad to hear him miss me and wonder where I was. He asked if his wife had died and is suspicious of what I am doing. He sleeps a lot, falls a lot, needs to have 24 hour supervision. We are living with our daughter so she can assist. It is sad to not have the person they were.

    • The Capgras syndrome was the saddest part for my Mother. They were married 50 years and he/LBD was so distrusting of her and constantly belittling the woman that once was the love of his life.

  10. Jessie, that is very hard to deal with, I am sure. Thank goodness, although my husband had many hallucinations and distrusted others, he relied and trusted me till the end. Dealing with what you are, is so hurtful even though you know it isn’t him. I agree also that the hard part is seeing your loved one slowly fade away. God bless all of you. This site has given me some comfort over the years.

  11. I wanted to thank you for you comments. They were comforting and reassuring. My husband passed away August 22, 2013. He was in the hospital for 10 days prior to passing and during that time he actually knew me and was so happy I was there. It was a nice memory for me to have. He seemed to be doing fairly well up to that point, he was mobile and eating some. Finally he stopped eating and drinking and ended up so weak he couldn’t stand or sit. It was his choice not to have a feeding tube or IV. He was capable of eating and drinking just chose not to. I am saddened to lose him but happy he is no longer dealing with this. We would have been married 47 years Sept 16.

    • That’s exactly how the end was for mine. He died in March. We would have been married 46 years this past August. It was just all of a sudden as the docs had predicted. Showered, ate, although tired and – boom – next day had fire rescue come to lift him for me. With the help of my daughter and sisters-in-law and Hospice we were able to keep him at home. God Bless us all – the emotions are up and down – please touch base in the furture if you need a release! Rosalie

      • Thank you Rosie, tomorrow is his memorial and I am glad that people remember what he was like before the disease. He had just a few friends that continued to come and see him and he missed the visiting with friends. Sharing this is very helpful and healing. Jessie

  12. My husband passed nov 22,2013 from LBD with recurrent UTI’s following open heart surgery for aortic valve replacement. Following his surgery he was not able to control the urinary tract infections and eventually passed in spite of much IV antibiotics. Watching him decline and not being able to help him was devastating to me. I am still reeling from the entire experience. Seeking help where ever I can find it. LBD is onE of the worst diseases I am aware of. More education and resources are severely needed. It has been comforting to read of others who have gone through the same experience. That you for your words.

  13. Mthank you all for posting. My mom is currently hospitalized and going through the latter stages of this disease. It helps to read about other peoples’s experiences. Thank you for sharing your stories.

  14. My 80 year old husband was diagnosed with LBD about 7 months ago. He’s had dementia for about 7 years. He’s gone through just about all of the symptoms including sun downing and capgrass. He’s still conscious, good appetite, , feeds himself. Other things he’s lacking. Constipation often then incontinence. It is wearing me out. . I am 73,years old, total knee replacement, triple bypass, 5 ft tall, past neck surgery. Total caregiver no outside help. After pooping for the last five days continuously, showering him,etc. he said he’s ready to give up and not send me thru this anymore. Shoul I put him in a hospice facility, or can I? We’ve discussed and have written living wills to this effect. Should I contact hospice?

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