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Medical Forum / Diseases and Disorders / Alzheimer's / March 2006Aricept
Hi there My mother (76) was diagnosed with AD 5 years ago, and has been on Aricept since then. My Dad (80) still manages at home with her, she goes to respite care 2 days a week. I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. Does anyone have any ideas on when to take people off Aricept? Regards Ruth New Zealand >"Ruth Bond" <ruth.bond@paradise.net.nz> wrote in message > >news:43f4d7d4@clear.net.nz... [quoted text clipped - 7 lines] >five years ago. >Does anyone have any ideas on when to take people off Aricept? When you want to take a chance and see if there will be a really big decline that will only be partially recovered when they go back on it, all for a measly $260? Sounds like its being doing its job, which is to slow down the inevitable decline, not stop it, there is no such drug. I can see why your lack of concern, since its not you, its your dad that will have to cope with the consequences. It must be really tough for him, 21 is pretty bad (my dad was bad enough when he was mid 20's) though in retrospect perhaps not so, he was tested and scored 6 last week :-) Take her off it, and I'd say, from personal experience, one or other of them will be in a home within a few months, chances are its the only thing keeping her up there. Her in a home because of the decline, him because he simply wont be able to cope any more, and his health will probably break down, if not his mental state. I'd suggest you take the advice of, say, oh I dont know, maybe a specialist, and go with what they say. And check out whether *also* taking memantine would help. Both taken together seem to get good reports. Though that would mean spending more money of course. regards, a pissed off Tumbleweed Thanks everyone for your comments. I should have said that $260NZ = $US520 - so its really not measly! I agree that Mum should stay on it, I was just curious to see if there was a cut-off point that is recognised. I don't live near my parents, but I do go over once a month for a few days. But I have a husband with terminal cancer, so its always a juggling act. Sometimes my parents come down here for a few days, but naturally Mum gets confused when she is away from home. I think Dad is wonderful to cope so well - he has had to learn to cook and shop! We have organised home help to do the cleaning, and he won't let her go into respite care - I organised it all, but he doesn't want it. At this stage 2 days a week, where they pick her up, look after her and bring her home each afternoon is a wonderful support for Dad. I think AD is so cruel, I feel like I have already lost my mother - she is not the person she was, but every now and then I get a lovely conversation like she used to be. I often read this newsgroup, and I think you all provide wonderful insights Have a good weekend Ruth > >"Ruth Bond" <ruth.bond@paradise.net.nz> wrote in message > > >news:43f4d7d4@clear.net.nz... [quoted text clipped - 34 lines] > > a pissed off Tumbleweed > I think AD is so cruel, I feel like I have already lost my mother - she is > not the person she was, but every now and then I get a lovely conversation > like she used to be. I often read this newsgroup, and I think you all > provide wonderful insights my first encounter with AD in its full manifestation was in a dear family friend, whose home was one of those in the neighborhood (ours was another) where *any* kids were welcome and where parents knew they never had to worry about their kids. she came up to me at a neighbor's funeral and started babbling total gibberish, and acted as though i would understand what she was trying to tell me. she and her husband, a retired presbyterian pastor, had retired several years before to their beach cabin near a small and remote alaskan village, and i hadn't seen her for a year. i was totally confused, tried to be polite, and then sought out her husband, who told me she had "alzheimers", a diagnosis that 20 years ago was just starting to be named, instead of "senile dementia" or "old age". when she died five years later, after four years in a facility, i expressed my sympathy to my dear childhood friend, her son, who told me that she really had been gone for five years. and that's it, the body is there but the person is there for shorter and shorter periods. AD families do a lot of grieving, especially spouses who grieve every time their loved one loses another ability. You might consider contacting the NZ hospice association about their grief counseling programs for families with of dementia patients. You should also try to find a caregivers' support group for your father through the NZ alzheimer's association. one thing they can do is inject some reality into the situation; those that have been there before will make sure he understands that he probably will not be able to keep her at home until the end. support groups are about the only effective weapon i've seen against denial. one thing about running a household in NZ i noticed when visiting the elderly grandparents of a friend when i was in there 26 years ago: most folks don't have to worry about keeping a heating system in operation like we do in most of europe and north america. from what i saw, a little electric heater was usually sufficient for the times a year that heating was actually needed in a home. one less thing for your father to worry about... > When you want to take a chance and see if there will be a really big decline > that will only be partially recovered when they go back on it, all for a [quoted text clipped - 22 lines] > > a pissed off Tumbleweed Tumbleweed, this is a cruel post with lots of assumptions about the poster whom you really know nothing about. Her question was very reasonable. My mother's geriatrician has frequently warned us that research indicates Aricept is only effective for 2 years. There is a lot of anecdotal information to suggest other wise, so we wouldn't consider taking my mother off aricept, but fortunately, her insurance covers the prescription. There was a thread a few days ago that asked where everyone was. I can't speak for this poster, but I don't think a response like this encourages newcomers who are seeking advice and support to stick around. >> When you want to take a chance and see if there will be a really big >> decline [quoted text clipped - 39 lines] > response like this encourages newcomers who are seeking advice and > support to stick around. An 80 year old person is caring, alone, for an Az sufferer,and someone else contemplates removing the one drug thats probably keeping the carer sane, let alone the sufferer, >>purely for money<<. I didnt bring up the money, they did, in their first sentence pretty much, as the >>sole rationale<< for stopping the drug, which a specialist in Az had recommended they keep. If $260 is a lot, try paying for a care home. Finally, according to my calculations, $260 NZ is $175 US, not $520 which IIRC the OP reported.  SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com I asked that same question of my MIL's doc a couple of years ago because when she was originally perscribed Aricept, we were told it had an effective horizon of about 16 months. Her current doc is the one that gave me all of the info about decline in mental and body functions. I was fortunate to have a doc to talk to that would consider anecdotal evidence. Her original doc was very much one to disregard what he sees in practice for "official studies". I would be a negligent steward of her funds if I didn't periodically reassess all of her expenses. At least once a year we gather a rent comparasion of comparable facilities, even though we like where she is, to make sure we're staying in range. $175/month is not an insignificant annual sum for some people, particularly when some docs still insist there is no prolonged benefit. Karen > An 80 year old person is caring, alone, for an Az sufferer,and someone > else contemplates removing the one drug thats probably keeping the carer [quoted text clipped - 5 lines] > Finally, according to my calculations, $260 NZ is $175 US, not $520 which > IIRC the OP reported. > An 80 year old person is caring, alone, for an Az sufferer,and someone else > contemplates removing the one drug thats probably keeping the carer sane, [quoted text clipped - 11 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com Except you don't know if the poster is asking on the carer's behalf, what other information the poster has about aricept, what the family has discussed, what finaincial burdens the family is facing etc. Unfortunately, money is one of the factors in the equation when caring for someone with alz. > Tumbleweed, this is a cruel post with lots of assumptions about the > poster whom you really know nothing about. it wasn't cruel, it was realistic. the OP asked for advice and got it. > Does anyone have any ideas on when to take people off Aricept? Based on my MIL's experience, NEVER. My MIL was taken off of it at one point during the year between her diagnosis and when she went in to the nursing home, because it "wasn't making her any better". What became immediately obvious is that it was holding her steady. Even though she was back on it very quickly, she never got back what she lost during that time. Even now, when MIL is in hospice care in the nursing home, they've maxed out her dosage to the allowable limits, and it still helps a little. She can recognize faces as people she should know, and she smiles at us and will respond to hugs and pats on the shoulder or hand. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain Right now, she has a lot of function worth preserving, if she is still well enough to not only be at home, but be at home in the sole care of a very elderly caregiver. $260 is totally worth every cent for each and every month you can delay the evil day your father won't be able to manage - and that day will come, faster than you think. If she goes off it, and has a big decline (which she will), the odds that your father won't be able to cope are greatly increased. The consequences of that are hugely expensive, both financially and emotionally for everyone involved. Seems like a deal to me. Have you checked out the cost of hiring help for your dad at home, putting her in daily respite, or a full time placement. Yikes. Now she's got something worth saving. Later, you won't be so sure. My MIL spent the last two years of her life unable to walk, talk, feed herself, incontinent etc. etc. At that point, you don't want to prolong the dreadful situation - but now - hey, 21 is not so bad compared to what's ahead. 21 is actually classed as MILD disease. See below synopsis of a 1999 study with the cost figures in 1996 dollars. * CMAJ. 1999 Nov 30;161(11):1390, 1392. Relation between severity of Alzheimer's disease and costs of caring. Hux MJ, O'Brien BJ, Iskedjian M, Goeree R, Gagnon M, Gauthier S. Innovus Research Inc., Burlington, Ont. mhux@innovus.com BACKGROUND: Data from the Canadian Study of Health and Aging (CSHA) were used to examine the relation between severity of Alzheimer's disease, as measured by the Mini-Mental State Examination (MMSE), and costs of caring. METHODS: The CSHA was a community-based survey of the prevalence of dementia, including subtypes such as Alzheimer's disease, among elderly Canadians. Survey subjects with a diagnosis of possible or probable Alzheimer's disease were grouped into disease severity levels of mild (MMSE score 21-26), mild to moderate (MMSE score 15-20), moderate (MMSE score 10-14) and severe (MMSE score below 10). Components of care available from the CSHA were use of nursing home care, use of medications, use of community support services by caregivers and unpaid caregiver time. Costs were calculated from a societal perspective and are expressed in 1996 Canadian dollars. RESULTS: The annual societal cost of care per patient increased significantly with severity of Alzheimer's disease. The cost per patient was estimated to be $9451 for mild disease, $16,054 for mild to moderate disease, $25,724 for moderate disease and $36,794 for severe disease. Institutionalization was the largest component of cost, accounting for as much as 84% of the cost for people with severe disease. For subjects living in the community, unpaid caregiver time and use of community services were the greatest components of cost and increased with disease severity. INTERPRETATION: The societal cost of care of Alzheimer's disease increases drastically with increasing disease severity. Institutionalization is responsible for the largest cost component. Ruth, my husband stayed on Aricept until he had to go to the nursing home. Gwen Hi there My mother (76) was diagnosed with AD 5 years ago, and has been on Aricept since then. My Dad (80) still manages at home with her, she goes to respite care 2 days a week. I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. Does anyone have any ideas on when to take people off Aricept? Regards Ruth New Zealand Ruth, I know Pfizer had a program here in the US for people on limited income to get Aricept at a reduced cost. Have you checked to see if that might be available to your Mom in NZ? I would not take away the Aricept until you are ready to see a rapid decline in mental function and body function. I was told by my MIL's doc to expect greater problems with urinary and bowel incontinence, possible problems with swallowing and decreased ability to walk as well as decreased mental functions. I know the day will come when my MIL comes off of it, but that will be when she has nothing left to lose. Karen Hi there My mother (76) was diagnosed with AD 5 years ago, and has been on Aricept since then. My Dad (80) still manages at home with her, she goes to respite care 2 days a week. I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. Does anyone have any ideas on when to take people off Aricept? Regards Ruth New Zealand > I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. > Does anyone have any ideas on when to take people off Aricept? Or course she has gotten worse, because Aricept only slows the growth, it doesn't stop it. Everyone I know who has stopped taking it has had a VERY rapid decline in capabilities, most of which was not recovered when Aricept was resumed. As others have said, if your father can cope now, chances are he couldn't if she went off. The price is a bargain compared to the cost of a nursing home, which, if he is physically frail, is probably inevitable. You and he need to plan NOW for that day, and select the facility and get on their waiting list if they have one. Hi Ruth, Michelle from Australia here, My answer is please dont my mother was taken off Aricept by a Dr in a nursing home without our knowledge it was several months before I found out too late I had seen a decline and didnt know why.It saddens me greatly but too late now. I am surprised you pay that amount for what is here in Aust as a PBS about $4-50 or less I think. I would be lobbying my local MP methinks regards Hi Michelle Yes, we have been lobbying the Government Agencies for years - even with the Drug Company! There are many people here who cannot afford Aricept, so they just don't get medication, they decline faster, and then they cost the country more for residential care sooner - its total madness. Sorry to hear your mother was taken off medication like that - aren't they supposed to consult with you? Regards Ruth > Hi Ruth, > Michelle from Australia here, [quoted text clipped - 6 lines] > I would be lobbying my local MP methinks > regards Simple answer YES My Mum was in a High care nursing home,I was very impressed at first then the Director of Nursing changed little things started to niggle at me. It was sheer coincidence when taking Mum for a second opinion on a cancer on her scalp that I asked for a copy of the current medication schedule, that I found out that the Aricept had been stopped some months before.I was shocked as I have Enduring power of attorney and guardianship over Mum and Dad. To cut a very long story short Mum is now in the high care unit of our local hospital around the corner from where I live so Dad and I visit between us most days. The Home she was in was 1 1/2 hour round trip. What about the media re the Aricept issue that really is a bad situation well disgusting really. Regards Michelle Hi there My mother (76) was diagnosed with AD 5 years ago, and has been on Aricept since then. My Dad (80) still manages at home with her, she goes to respite care 2 days a week. I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. Does anyone have any ideas on when to take people off Aricept Regards Ruth New Zealand Hi... My mother got dementia just before Aricept came out. She took it for awhile but quite frankly we've never seen a difference whether she's taking it or not. The doctor has prescribed it for her but my brother and I agree since it makes her sick and there's really not any difference in her condition. We've discontinued it for now. It's been a question for us too after nearly 13 years of extremely slow dementia. Aricept isn't for everybody even though there are people here that think it is. Follow your instincts on this one. I have checked online and you can get Aricept at http://www.drugstore.com/ for around $132 to $135 a month depending on the dose. Free shipping in the US. I believe they ship internationally too. They are reputable. Hope this helps.......June hey ruth i am nexxt door, in oz, my FIL is on this too. I dont have much to add, but sounds pretty tough what you are going through with your hubby too, so try to not to pay attention to people that give their advice in not such a nice tone. They mean well, even if they dont come across so nicely. good luck to you and yours chris Hi there My mother (76) was diagnosed with AD 5 years ago, and has been on Aricept since then. My Dad (80) still manages at home with her, she goes to respite care 2 days a week. I believe she has got worse, and as we have to pay for Aricept (around NZ$260 a month) I wonder if she should come off. Yesterday she went to the specialist and he said they wait till MMSE is around 12 before they take them off - she is now 21, after being at 27 five years ago. Does anyone have any ideas on when to take people off Aricept? Regards Ruth New Zealand |
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