Caregiver survey

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What do the numbers say_
Ever since my husband was diagnosed with Lewy Body Dementia in 2011, I’ve searched for information pertaining to life expectancy and speed of progression. My reasons were multifaceted. First, I’m one of those persons who needs to have a plan. I can’t blindly go from day to day, hoping things will work out for the best. Some might call me a control freak and maybe I am, but I prefer to think of myself as a pragmatist. I’m not wealthy and I know care can cost a great deal. I needed to know what to expect and how quickly the disease could progress so I could make financial decisions for our future.

While doing my research, I discovered the average life expectancy for those with Lewy Body Dementia is 5-7 years after diagnosis, but I had met many caregivers who’d said their loved ones had lived with LBD for ten or more years. I was confused by this. I was also confused by the articles which said a person with LBD could possibly live up to 20 years. It was my understanding that doctors hadn’t recognized/diagnosed Lewy Body Dementia until the early 2000s. How could there be individuals living with the disease for 20 years when it’s been fewer than 20 years since doctors began diagnosing it?

Since these questions are shared by many caregivers, I decided to do a survey of caregivers to gather information from those actually dealing with the disease. My hypothesis was that when asked how long their loved ones have had Lewy Body Dementia, many caregivers go back to the time they first noticed symptoms as opposed to the actual time since diagnosis. However, the medical profession’s predictions of 5-7 years is based on the time after an actual diagnosis.

I postulated that most doctors will not diagnose the disease until the symptoms are obvious enough to be fairly confident in their diagnosis. Once the loved one has reached that point of decline, the average life expectancy is 5-7 years.

Based on those assumptions, I asked the caregivers a few questions:

1. How old was your loved one at the time of diagnosis?
2. In what year were they diagnosed?
3. What is their current condition?
4. If deceased, how many years did they live after diagnosis?

The following information was collected based on those questions. There were 109 caregivers who responded from two different on-line support groups. (Five did not include all the information, so some of the areas have only 104 responses)

Some key points to remember:

1. This was a small sample group and it was not selected by any scientific criteria.
2. Since the information came from caregiver support groups, most of the caregivers whose loved ones had passed away were no longer active in the groups, therefore the number of respondents for this category is small.
3. Since it is impossible to make a definitive diagnosis until an autopsy is performed, it’s likely that the loved ones of some of the respondents had a dementia other than LBD or even had multiple dementias.
4. Other comorbidities (other health issues) were not taken into consideration since the 5-7 year average stated by the medical professionals also does not consider comorbidities.
5. An average is not a law. For example: The average height of men in the US is around 5 feet 10 inches tall, but all of us know men who are either taller or shorter. Knowing that information, however, allows doctors to determine if someone is way off the average in order to intervene if possible. Averages are only used to help in decision making. If knowing this information is upsetting to you, DON’T READ THE POST. On the flip side, please don’t criticize those who need to know.

RESULTS

AGE OF DIAGNOSIS:
The average age of dx (diagnosis) for this group was 67.7 years with the youngest being 46 and the oldest diagnosed at 91.

Raw numbers: Three (3) of the respondents had loved ones diagnosed in their 40s. Nineteen (19) were dx in their 50s. Forty-Three (43) in their 60s. Twenty-nine (29) in their 70s. Thirteen (13) in their 80s and two (2) in their 90s.

*note* The average life expectancy for the general population is 78.8 years. Only 50% of the general population is still living into their 80s, therefore a smaller number of people diagnosed in the 80s and 90s would be expected.

AVERAGE CURRENT DURATION OF DISEASE SINCE DIAGNOSIS:
By removing those who’ve passed away and those diagnosed this year (due to the fact those would all be less than one year in length), we are left with 83 respondents. The average time since diagnosis is 3.34 years. (The average member of this group has been providing care for 3.34 years since their LOs diagnosis.)

Raw numbers: Two members were diagnosed in 2003. One was dx in 2004. Two in 2006. One in 2007. Five in 2008. Five in 2009. Five in 2010. Five in 2011. Nine in 2012. Twelve in 2013. Twenty-five in 2014. Eleven in 2015. (Nine were diagnosed in 2016)

CURRENT STATE OF LOVED ONE:
Five of the respondents didn’t provide this information making the sample group for this category 104. I divided the responses into three main areas: Still at home, Facility (assisted care, memory care, or nursing home) and deceased.
HOME-
-Thirty two (31%) of the caregivers stated their loved ones were still home, but they did not share the level of care needed.
-Seven (6.7%) stated their loved ones were home and functional/active. (According to the caregivers, these were all diagnosed in the last 2 years)
-Eleven (10%) said their loved ones were home, but needed extensive care.
-Five (4.8%) said their loved ones were home with hospice care.

FACILITY:
Twenty-six (25%) said their loved ones were in some type of care facility with two in this group also in hospice.

DECEASED:
There were 21 respondents in this category with two failing to provide the number of years their loved one lived after diagnosis. The longest reported lifespan was 8 years. The shortest was 45 days. The average for the group was 3.5 years.

Raw Numbers: One lived 8 years. Two lived 7 years. Two lived 6 years. Four lived 4 years. Two lived 3 years. Two lived 2 years and five lived one year or less.

In conclusion, based on this sample group, the hypothesis was correct. While many people will say their loved one has had the disease for several years, they are generally basing that on how many years it’s been since their loved one began showing symptoms not from the point of an actual diagnosis. None of the respondents in this group had loved ones diagnosed 20 years ago. The earliest was in 2003 (thirteen years ago) with the majority (61%) being in the last 3 years. Seventy-five percent (75%) were diagnosed within the last 5 years. (Only 25% of the respondents had loved ones still living for more than 5 years after diagnosis.)

Possible reasons for these numbers could be the increase in doctor awareness in recent years. It’s been estimated that 80% of those with Lewy Body Dementia have been misdiagnosed with Alzheimer’s disease. Many doctors are still uninformed about Lewy Body Dementia which continues to cause misdiagnoses. Some of the respondents shared their loved ones were originally diagnosed with other dementias a year or two prior to the diagnosis of LBD. The increase in more recent diagnoses could be a result of an increase in doctor awareness.

Another unfortunate explanation for the vast majority of loved ones having diagnoses of five years or less is due to the fact the average life expectancy for LBD is 5-7 years after diagnosis, therefore there would be fewer respondents with loved ones still living past the 5 year mark. The average life-span of 3.5 years after diagnosis in this study group supports the latter explanation.

What to take from all this?
1.Knowledge is power. The more you know about this disease, the better prepared you’ll be for planning future care.
2.Averages are just numbers. There’s no way to predict if your loved one will be in the average group or will be one of the extremes.
3.Prepare for the worst and hope for the best.

Blessings to you!

 

*Feel free to share this post if you feel it might help others gain a better understanding of the caregiving journey. If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.

*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page. There are also buttons at the top for helpful links, and other information.

*I’m also a published fiction author. If you want to check out my books, you can find out more about them here.

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15 responses »

  1. Thank you so much for your effort. I totally agree that knowledge is power. I so wish for more extensive research on this horrid disease. In our case, since my husband is a Vietnam Veteran, I wonder how many have this disease due to the chemical poisoning associated with Agent Orange.

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    • There has already been a connection made between Parkinsonisms and chemicals, particularly herbicides. My husband worked at a farm center for several years where he mixed herbicides with his bare hands. I can’t help but wonder if it triggered his illness. Thanks for commenting!

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      • My husband was diagnosed last year with LBD. 2011 he was diagnosed with Parkinsons. I suspected LBD for 2 years prior to diagnosis.

        I needed help last fall so I made claim to our Long Term Care insurance, which covers a daily amount for 5 years. My concern has been running out of insurance too early. I asked our PCP recently about it and he said if he were in the same situation he would be claiming also.

        So, if I’m reading your survey results accurately, this does seem reasonable and may likely cover the time period needed, if we’re average. Correct?

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      • I wish I knew the answers for you. There’s no way to know if your husband will fit the average life expectancy or not. There are other tests you can take to help with that guess (see the helpful links button at the top of the page) but in the end, it’ll still be a guess. If I knew how to be sure, I’d use that information for my husband as well. The only advice I can offer is to plan for more years than you think you’ll need. Blessings.

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      • It’s amazing the things that were used years ago we now realize were very dangerous. I wonder about the general increase in dementia in our society. I suspect we’ll discover many more connections in the next few years.

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  2. My husband was diagnosed in 2012. At the time I knew nothing about the disease. He lives at home with me being his primary caregiver, with some help. He is now 84 and it is becoming more difficult for both of us. He needs help in all his needs and somebody to walk with him as he is falling more often. I worry that I cannot find a place for him near home, and when this might have to be. Thanks for listening.

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    • I’m sorry, Darlene. This disease is horrid and it places so many people in extremely difficult situations. I would suggest you start looking for placement options now so when the time comes, you’ll already have a plan ready. Blessings to you.

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  3. I can’t tell you how helpful this post was for me! My FIL was dx with LBD initially in May of 2015, but he didn’t like that doctor (he was the first one to mention the word ‘dementia’ to him). The dr. he does like dx him with Alzheimer’s solely because he doesn’t have the LBD REM sleep disorder symptom (but he has all the others!). His progression hasn’t been at all like Alzheimer’s, and so it has been so difficult to know how to prepare. The LBD dx makes the most sense to me, so I’ve been encouraging family members to prepare for the possibility of needing a nursing home sooner rather than later. He is incontinent, is completely reliant upon a walker, and is having difficulty remembering where his bathroom and bedroom are in their single-level 1200 sq ft home. The changes we’ve seen in this last year have been devastating. And yet, because it is LBD, he can converse normally one day and then the next he’ll not realize it is his wife he is talking to. This is the first place I’ve seen the information I’ve wanted to know, primarily how many years past dx can we expect him to live. If we go by Alzheimer’s numbers, it means a different way of allocating my in-laws meager resources. But these numbers mean that it is even more important to encourage out-of-town family members to visit and spend time with their loved one. This disease is heart-breaking. The hardest part has been watching my FIL turn into someone we don’t know. THANK YOU. I can say hands down that I’ve learned more about this disease from fellow caregivers than doctors.

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    • Becky, I’m glad you found the information here to be helpful. Please remember, this was not a scientific survey as the participants volunteered their information. But since the numbers here coincide with studies run by medical researchers, I think they’re valid enough to consider. I also have learned much more from other caregivers than I have from doctors. Doctors are reluctant to share any information not supported by research, but the caregivers in the trenches see what happens day to day. Blessings to you and your family. This is a tough illness.

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      • From all I’ve read, the scientific research on LBD is pretty meager thus far! I so appreciate hearing what other families are experiencing. It is particularly valuable since each person’s journey is so individual — when you come across a family experiencing similar symptoms it feels like a relief to know you aren’t alone. Your blog is so helpful. Thank you!

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  4. Hi Lisa Thank you for such a helpful article. My husband was diagnosed with LBD when he was 61 three years ago. I am sure in terms of age, you may live longer with LBD if you are in your 60s, than 70s or 80s, but I wondered if you had drilled down into it and if you could see if it made a significant difference. My husband seems to have aged incredibly in the past three years, with LBD taking its toll. All strength to caregivers and thank you to you for your really valuable and interesting blogs.

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    • Hi Kim! My sample group was too small to get any significant data for ages and life expectancy, but with the group I had, there didn’t appear to be a difference between life expectancy and age of diagnosis. My husband was diagnosed at the age of 58 and is now 62 and in the final stages. It’s amazing how quickly this disease progresses. Blessings to you.

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  5. Pingback: Lewy Body Dementia 3 Stage System | Lewy Warriors

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