Do you have experience with Lewy body dementia?
February 22, 2018 12:05 PM   Subscribe

A relative has recently been diagnosed with dementia with Lewy bodies (probably Lewy body dementia, but possibly with some Parkinson's dementia features). I've done a bit of reading about it, and it seems the course and prognosis can vary greatly, so I'm hoping to learn more about what to expect and how to help with future planning and supporting his spouse.

I understand care is only palliative but it seems with the wide range of symptoms it might be quite different for different people (e.g., life expectancy 2-20 years after diagnosis), but mostly seems fairly brutal. Both my relative and his spouse are in their mid-60s, so quite young, and his spouse is very active and vivacious. My relative has had other health issues in the past few years that have sidelined him greatly. At the risk of sounding cruel, I am keen to support his spouse in continuing to enjoy these good years of her life and not become a full-time caretaker, if possible. I also know my relative fairly well, and hate to say he can be selfish and I'm not sure he'll prioritize her safety/well-being over his own. I am not local to them (2 hour plane ride away), so cannot provide much on-the-ground support at this time, unfortunately.

My relative, at this point, is cogent but having lots of panic attacks, behavior changes (mostly anger/aggression), some confusion (difficulty with directions, can't remember how to operate hose, etc.), exhaustion, and mild hallucinations. He is getting good medical care and has good insurance, so we are grateful for that. He also has severe sleep disorder that is worsening and he kicks and screams throughout the night, which is concerning as he's much larger than his spouse, so I'm worried for her physical safety.

What was the course like for LBD/DLB in your experience? Did your friend/relative move into an assisted living facility, and if so, when? How were you able to support the person's spouse and family, and if so, how? Any advice for helping with planning and supporting moves into assisted living, and other end-of-life decision making around dementia? Any other thoughts or experience welcome. I've seen this previously about Robin Williams's wife's experience, but would like to know more. Thanks in advance.
posted by stillmoving to Health & Fitness (7 answers total)
Best answer: My grandfather developed this aged 88. He continued to live alone with my mum visiting everyday for 2 years. He gradually found it harder to manage everyday tasks and was clearly hallucinating (though he knew the visions weren't real). This came to a head when he was found wandering around his town half naked and confused. He had set fire to his hob by trying to cook baked beans in a plastic tub, microwaved a bagel until it charred and gone out without closing the front door. Later mum discovered lots of soiled underwear that had been draped over radiators to dry without cleaning.

He was in hospital for a month and then a specialist psychiatric hospital for 3 months while they diagnosed him then fiddled with medications. The meds helped immensely and his confusion improved to the point where he recognised family again, could read the newspapers, could tell familiar stories and stopped attacking other patients and nurses. He went into a care home because we felt that we could control all the hazards in his home but we couldn't stop him walking out of his front door onto a busy road. My mum felt extremely guilty and visited him for several hours every day.

A year later he had a similar episode and ended up in hospital again. This time he lost the ability to walk and became much more confused and less responsive. After 6 weeks he went to a different care home. He had some good days where he could hold a conversation but he didn't recognise me again and he remained bedbound. Mum continued to spend all her spare time with him.

18 months later he suddenly developed breathing difficulties and died that night. Mum says she is very happy that she was able to be there for him on every good day he had. She feels she has no regrets. But it has massively affected our family - she has barely seen her two new grandchildren.

I also work with dementia professionally. Lewy body dementia is characterised by variability so it is hard to generalise. You are right to be worried about the aggression. I once met a patient's wife who was distraught because she felt his deterioration had happened since she decided he needed to be in a care home. I asked her what had led to that decision and it turned out he had thrown her down the stairs and broken both her arms. And she still felt she had let him down. A carer role can be emotionally very complicated. Be prepared to do a lot of listening and supporting decisions that don't make sense to you.
posted by kadia_a at 1:41 PM on February 22, 2018 [1 favorite]

Best answer: FWIW: My sister's husband has it. It's a pretty devastating disease, at least for him and his family, and it's progressed much longer than expected by drs who gave him an 18-36 month time frame when he was diagnosed more than five years ago. He's 80 now and still deteriorating, but slowly.

For about a year he's had one adult son as a live-in full-time (unskilled) caregiver, with another adult son (also live-in) providing some help, and my sister (who lives 3.5 hours away and works full-time) coming home most weekends and holidays to give the first son a break. He was in home hospice from May 2017 - January 2018, really for a blood clot more than anything but the Lewy Body issues are one reason they decided to go that route rather than try to eradicate the blood clot (the latest in a number of medical issues mostly unrelated to the LBD - he also has prediabetes and other circulation issues), but earlier this month the powers that be in health insurance took him OFF home hospice and now Home Instead comes -- I think for an hour or two every day but not sure -- and the same son is still the full-time caregiver, which is really wearing on him; he has had medical issues of his own caused by his 24-7 caregiving.

For my brother-in-law, the worst symptoms all along have been the ongoing night terrors, the daytime hallucinations (especially in an unfamiliar environment, like a hospital), definitely confusion and bewilderment (e.g., when he thinks he needs to go get groceries and tries to find his car keys to head to the store -- he hasn't driven in several years), major balance issues (several falls). He also has behaviour and personality changes (thinking people are trying to poison him, e.g.), mostly in the last year or so ... and who wouldn't, not understanding anything going on except that, in his psychotic moments, he's being menaced.

At this point, he needs almost total help with bathroom functions, which is very difficult when they give him an enema, e.g.; he's pretty much bed-ridden; he can mostly eat only soft things (but his appetite is good); he doesn't know one son (the one who doesn't live at home but who visits every few months -- he's a senior in college two states away) or most other people; and the screaming at night goes on and on, and lately he's also very belligerent in the late afternoon hours, from 3-6pm.

He is on multiple medications for his symptoms but most anti-anxiety, anti-psychotic meds have the opposite effect on him, so he's hard to treat.

Some of us have advised a nursing home (assisted living is not really an option now for him, I don't think, though I'm not clear on the differences), but my sister feels that making him leave the house to live elsewhere would kill him in a matter of weeks, as he has extreme issues with unfamiliar places, long preceding the LBD. Some of us don't think that's the worst outcome that could occur, but it's her call, and her sons', at least two of whom, including the full-time caregiver, who think he should stay at home.

The way I support my sister and sons is to be available day or night for phone calls when there's a crisis, and there have been a few, to try to help my sister decide what to do; and to do online medical/insurance/caregiver research as needed. If she sounds at all like it's getting to be too much, I suggest nursing home care or a 24-7 skilled non-family caregiver. I would help pay for either option if my sister were willing but so far she is not. I live 600 miles away but I've offered to come help; he never really liked me (political differences), so none of us thinks my presence with him would help much. He's mostly in an irrational state now.

A note: My sister and her husband are married but haven't lived in the same house or town for 15 years or so, so her safety in bed with him when he thrashes and lunges, e.g., is not an issue. (She sleeps in another room when visiting.) That would worry me, if she were in the same bed. His night terrors are loud and scary and very disruptive not only to him but to the whole household.

Personally, I would make the move to assisted living sooner than later (or if they can afford it, a 24/7 skilled caregiver so the spouse could attend to him as she wants but is not on call for nursing treatment), but not everyone sees it that way.
posted by mmw at 1:41 PM on February 22, 2018

Best answer: Oh, and have end of life conversations as soon as possible. It is much easier to star talking about it when it is all theoretical and a long way away and you never know when it will be needed.
posted by kadia_a at 1:42 PM on February 22, 2018

Best answer: I have worked professionally with many people with LBD, and I will echo others who say that it really does vary day to day and sometimes hour to hour. One thing to be aware of is that because of the hallucinations, delusions, etc., people with LBD can be volatile and really benefit from a calm and reassuring environment. There are also a lot of sensory issues--easily overstimulated by light, sound, etc., that are easily overlooked when a caregiver is so busy dealing with all the cognitive changes and dealing with behavioral outbursts. Behavioral outbursts are often triggered by either the hallucinations or those sensory overload moments, so it helps to try to work backwards from the outburst to what the triggering event was, and to adapt the environment to avoid it if possible in the future.

Her safety is very important and safety planning should be taken seriously, for sure. If he is being physically aggressive, he might not have the impulse control to control his behavior and he could hurt her being bigger and stronger than her. It is common for anti-psychotic or anti-anxiety medications to have the OPPOSITE effect on someone with LBD, and actually make them more agitated and anxious. She should talk to the doctor about any medications recommended.

I'd encourage your sister to reach out to her local Lewy Body Dementia Association and the Alzheimer's Association. The Alzheimer's Association has a 24/7 helpline at 800-272-3900, and they serve people with all kinds of dementia, not just AD.

For understanding what it's like to have LBD and getting good tips for behavioral interventions, I've found Teepa Snow's techniques helpful. She has videos where she talks to and works with people living with the disease and they explain how her actions (both positive and negative) affect them and the way they feel.
posted by assenav at 1:56 PM on February 22, 2018 [1 favorite]

Best answer: I take care of people with this disease every day. Feel free to MeMail me. Depending on where your relative is, I might be able to suggest some local resources that can help.
posted by basalganglia at 2:36 PM on February 22, 2018 [1 favorite]

Best answer: It's a crummy diagnosis; I'm sorry to hear it. A family member was diagnosed in his late 60s. His wife is healthy and they have savings, which helps greatly. He is not violent at all, in fact has become rather passive. He goes to an Adult Care program every day, and they just moved to a complex with independent/ assisted/ nursing care, and she's feeling okay about being able to manage for quite a bit longer. When he is too hard to care for, he'll move to nursing care, she'll stay in independent living. Nursing care varies a lot in quality, get lots of referrals. Talk to a financial expert; the way the finances play out with Medicaid is complicated.
posted by theora55 at 2:58 PM on February 22, 2018

Response by poster: Thank you all for sharing your experiences, I really appreciate your insights and recommendations. basalganglia, I've just memailed you.
posted by stillmoving at 4:43 AM on February 24, 2018

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