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    Angela Lunde

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  • Alzheimer's blog

  • Sept. 27, 2007

    Alzheimer's disease and dementia are different

    By Angela Lunde

324 comments posted

My sincere appreciation to all of you who have posted a comment or two on this new blog, I am elated by the rapid interest! Your exchange of stories, ideas, and challenges, along with the compassionate support you are giving one another, is exactly what I hope this blog can provide. As one individual stated, "Your experiences will comfort me."

Know that I will weigh in from time to time on some of the issues that surface, but for this blog, the real experts will be all of you impacted in one way or another by Alzheimer's disease or a related dementia. Each of you can provide a depth of knowledge shaped by your own circumstances; when it comes to a devastating disease like AD, sometimes simply an exchange of experiences is what matters most. I will, however, comment on themes and general issues that emerge and provide links to resources that I think can be beneficial.

For this entry, let me just state that there is often confusion and misunderstanding with the terms Alzheimer's disease and dementia, but there is a distinct difference.

The term dementia refers to a set of symptoms, not the disease itself. These symptoms might include language difficulty, loss of recent memory or poor judgment. In other words, when an individual is said to have dementia they are exhibiting certain symptoms. With a thorough screening including blood tests (to rule out other causes of dementia such as vitamin deficiency), a mental status evaluation, neuropsychological testing, and sometimes a brain scan, doctors can accurately diagnose the cause of the dementia symptoms in 90 percent of the cases. (It is true however, that Alzheimer's can be diagnosed with complete accuracy only after death, using a microscopic examination of brain tissue, which checks for plaques and tangles).

Although Alzheimer's disease accounts for 60-70 percent of cases of dementia, other disorders that cause dementia include: Vascular dementia, Parkinson's disease, dementia with Lewy Bodies and Frontotemporal dementia.

In the early stages of a disease, there can be some clear differences between the diseases. For example, in dementia with Lewy Bodies (the second most common cause of dementia) early symptoms of the disease may not be so much forgetfulness, but lowered attention span, recurrent visual hallucinations, and a fluctuation between periods of lucidity (or clear thinking) followed by periods of confusion. However, as the specific disease advances, more parts of the brain become affected, and the differences from one cause of dementia to another are subtle.

In concluding my entry today, I'd like to pose a question: You may have heard the saying, "When you've met one person with Alzheimer's, you've met one person with Alzheimer's disease." In other words, no two persons are similar in how the disease impacts them. This holds true for caregivers as well. If you have seen how Alzheimer's disease (or related dementia) impacts one caregiver, you have seen how it impacts one caregiver. If you are caring for someone with Alzheimer's disease or a similar dementia, how has it impacted you, more importantly, how do you cope?

Keep posting!

In Support,
Angela

324 comments posted

blog index

  • March 28, 2011 12:13 a.m.

    My Dad died at age 90. Hospice diagnosed him with dementia. My Mother is now 91 & has dementia, struggles to remember everything. I am almost 62 & am quite concerned about the possibility of EARLY onset of dementia &/or AD...I've been married 22 yrs. & often can't remember things that my husband &/or daughter talk about that I should remember. On several occasions, I couldn't remember how to get to the local Hospice bldg. Very often I can't remember the names of people that I am with. When trying to think of a particular word, it's like there is a blackboard with lots of words on it & I am seeking the word that I want to use. I can tell by the look on people's faces that I have obviously said something that did not make any sense. I asked WHO a particular person was...that I worked with...Where should I start to get some help...

    - Janey

  • March 20, 2011 10:28 p.m.

    We've been told that my dad has alzheimer's and he's in a dementia facility. However, he seems so much better than other people there; but my mom cannot handle him at home. Are there "half-way houses" set up yet? It's all pretty unsettling...

    - Barb

  • March 17, 2011 1:01 a.m.

    I;m very concerned about myself. I have always been forgetful of names of people,ect. I'm 44 years old and I have been driving with my husband and alone when I can't remember where I'm at. Nothing looks familiar and I've lived here for 42yrs. This is bothering me alot. This is just started. I feel like I'm in a strange place. then it comes to me. I get scared and start to panic.

    - missy

  • March 16, 2011 12:26 p.m.

    I am not the direct caregiver of my dad, my mom does that. I check up on my parents daily, because of my dad's advanced dementia. I don't live with it 24-7, but my mother does. What I have seen her do is basically give up her life completely to take care of my dad. My concern at this point is not so much my dad, but my mother who is killing herself taking care of him. She made this pack with him not to ever place him in a home, and I told her that she should have never said never. We don't know what this disease will bring us down the road. For the most part he doesn't know me anymore, and I know he has periods every day that he doesn't know my mother either. They have become very reclusive, have withdrawn from family and friends, and are living in isolation in there house. It saddens me so much for both of them, but have no control at this point over my dad's care, because that is my mother's responsibility and I certainly cannot over step those boundaries. I am just curios to know if other people dealing with a similar situation, where they are seeing the caregiver give up on themselves and everything revolves around the patient with the dementia. My fear is that my mother will die first, and I certainly cannot keep a promise like she made to never place him in a home. It all scares me and saddens me to no end.

    - Helga

  • March 13, 2011 5:51 a.m.

    Hello, -Diagnosis based on questionable memory testing -4 times on the same visit- and on MRI’s as “early onset” AD: doctors advice: take “Aricept” and “Ebixa” and continue with “Cymbalta”, i.e. having taken it for the last 3 years, and see me in a year… -10 months later starting into a 3 month freefall of changes incl. personality, now of a child…with “Seroquil” taken to “combat” the delusions etc… -After a 6 day crisis hospital stay now on different medications incl. “Buspirone”, “Haldol” and “Clonazepam” -all 3 times daily- making no difference other than being “stoned”, barely lucid, unintelligible, extreme cognitive impairment, attention span down to 2-3 seconds, panic attacks and frightened “out of her skull”… -This was a brilliant mind working in senior executive positions in the information technology and human resources sectors for 25 years… -I am the husband and now care-giver, just coping with the loss of my partner and dealing with a new person in the familiar body…

    - K'nud

  • March 5, 2011 2:01 p.m.

    i have been battling with short term memory loss for 2yrs now... i have lost days and have trouble remembering where i have put things or when i do put something down right where i have laid it i find myself looking for that item as though it has disappeared right in front of my eyes.. or even if i write down what i plan to retreive from another room etc. i can't find the list or by the time i get to the location i can't remember.. i have to ask my son to check behind me... i am in the middle of a conversation and i can't remember what i was talking about... which could take moments... i have experienced recognizing someone i have seen everyday and can't get their name out... sometimes if i go somewhere i have asked my son where did i go... my father is in late stage altzheimers he is in his 70's and i have been experiencing this since my midd50's.. i have talked to my doctor about this and he thinks i'm too young... for the lost days and blackouts he began giving me dilantin... it's so so... but the memory issues were still prevelent... so i consulted with him again and he agreed to put me on Aricept 5mg for a month to see if it helps... i have just started it this week.. i am also taking paxil 20mg.. why is it so hard for doctors to spot what is going on with memory loss & treatment? also when i use my cell and text... i find myself searching the keypad for letters i have just used... it's very nerveracking.. i'm only 59.. what's your take?

    - calidee

  • March 3, 2011 2:45 p.m.

    How many stages will patients with FTD go through and how will we know which stage is which. I've been told that two of my family members have FTD and myself and the rest of my family would like to know what to expect and I also take care of one family member with FTD. Our mom and dad have passed may they rest in peace and both of them had Alzheimers. Can you give me some more insight on this disease/disorder?

    - Renee' March 2011

  • February 26, 2011 2:07 a.m.

    For someone who loves a partner, onset of dementia from any cause is very difficult. As the person slowly loses his ability to communicate and is aware of what he is losing., his fears and suffering as he reakuzes what is occurring are unbearable to see. No amount of gentle consolation can stop the terrible progression into a sort of psychic death. As a result, the years prior to actual death become a mourning for a loved one who is no longer alive as his former self. It is not easy to care for the needs of the partner, but it is easier than bearing the terrible loss of a partner's company, It is lonely. Your best friend is no longer there for you.

    - Mary

  • February 26, 2011 2:04 a.m.

    There are times I do not cope well at all. My mom has Alzheimer's and my dad has old-age dementia - he is 91. Watching them both decline at the same time is heart-breaking to say the least. At times, I experience deep depression and sadness at watching two people I love diminish and become child-like. My responsibilities seem to increase as time goes on. I am a single mom and need to work full-time to pay my bills. My sister and brother live in different states and do not visit often. I am thankful for my aunt, who lives in the area and takes my mom and dad out sometimes and takes them food shopping. I don't know what I would do without her - and I always tell her so. I help with getting and organizing their meds, helping them to get their clothes ready to shower, do their bills and banking. I sometimes worry about them living in their home by themselves, but we have turned off the stove and the oven and had a elder care specialist visit and evaluate their home and she said it is pretty safe. I finally came to the decision that I cannot do it all by myself, and hired a homecare person to come and give their meds. on the days I work and do some of their house work. A cleaning lady comes once a week to do deep cleaning. I am fortunate that my parents saved for the old age and they have enough to get by on for a few years, depending on the type of care they will be needing in the future. I think getting help, with the push of some friends, was the best thing for me

    - Denise

  • February 24, 2011 11:03 p.m.

    My mom has early onset vascular and alcohol induced dementia at 65 years old. She now lives in a nursing home, and I am her primary care giver. It is very stressful at times, as I have 3 young kids of my own, ages 2,5 and 7. I cope by having a close knit group of church friends that meet twice a week...to pray and socialize...I try to work out at least 3 times a week...and I try get "me time" each week. It is essential to take extra good care of your needs...so that you can be a more loving and giving caregiver!!!

    - Mary

  • February 21, 2011 1:35 p.m.

    I am so glad that I came across this article and blog page today! To Pam, I think what you're pursuing is awesome! I hope I can find someone like you in the near future to help care for my ailing parents (we're in the St Louis area). To Cindy, Thank you for sharing your story. My dad is 84 and has Alzheimers along with multiple health problems. He & my 82 yr old mom still live in their home but my sister and I are very involved in their care. We feel like it won't be long before they will need to move into assisted living, even though my sister is living with them right now. She leaves everyday for work and they are there alone for several hours to care for themselves, but we are a only phone call away, and are beginning to look at people who can come into their home to help with things, and yet are affordable. We've thought about the day that we may have to put our dad into a home as the Alz progresses, and that's why I REALLY appreciate what you said about continuing to be there for them. He was recently in hospital and rehab two different times since November, and both times was SO miserable in rehab (who could blame him). I just hope that if/when the day comes, that he will be at a state of mind that he won't really realize he's not at his home. It's so hard to watch your loved ones slip away a little at a time!

    - Jillian

  • February 21, 2011 1:19 a.m.

    PLEASE PLEASE HELP US,,,,,Making a long story short......Husband wounded in combat in Vietnam in 1966 Hit with numerous pieces of shrapnel while serving aboard a US Destroyer. One piece hit him in the forehead, which threw him 15 feet into a Bulkhead, which in turn put him in a coma for 8 days. He has always had different problems through the years. Within last few years he has been diagnoised with mild dementia, Traumatic Brain Injury, and severe PTSD.VA misdiagnosed him many years ago. He cannot have an MRI, because of many pieces of shapnel in his body, with two pieces still in right eye, which he is blind in.,Just diagnosed with Macular Degeneration in left eye. He has so many symptoms that I do not know if they relate or not. One is he seems angry with me all of the time. We have been married 44 years.I am exhausted with trying to get him the right help, and him accepting it. He is registered in the Mayo Clinic..But have not gone please i need some questions answered..as soon as possible. If you could help me Please...

    - susan

  • February 19, 2011 5:35 p.m.

    I would be interested in knowning the onset of dementia or early alz.How does one determine if we are just forgetting things as we age or are we headed for bigger problems Why I ask is,lately when I am talking to family I noticed as they do that I will stop in the middle of a conversation and look and think for words they fill in the gaps a lot more lately can I do a search here perhaps: ? thank you

    - evie

  • February 17, 2011 8:17 a.m.

    i also found out that in western culture... young people or most of the children of the older generations nowadays... they are all busy... they could spend months in a travel vacation... they could watch TV an hour or more in a day...they could spend time gallavanting or shopping with friends 3x a week. But they couldn't spend 24 hours even for just once a month to thier mom or dad that are needing special attention. to think that they are brought up by thier parents for almost 18 years of thier life . isn't that's queer? (for eastern culture) ... i'm sorry but that is my observation...not all western people are like this but there are quite a few... we are spoiled here...we don't like burdens ...we don't like inconveniences , we have nursing homes for the old people... we have health care to take care of them... BUT ... we will get old too... how do you like to be taken care of ? ? ?

    - jane

  • February 17, 2011 7:56 a.m.

    it seems like i have found my own world in this blog...thank you so much . i'm a a foreign live-in Caregiver... to start with i didn't know what an alzheimers or dementia before...all i know since i was a young girl is that i have to respect elderly people and love them and make them feel important, even if they are acting strange like forgetting things or being mean to others. I was even thaught at home that "You have to treat old people , the way you wanted to be treated when you get old , because you couldn't escaped getting old. " so, that has been inculcated in my mind even as a young girl. so, eversince i always have a high regard with older people... I think that if only we could be constant with our love to them ,they needed love and time , it would just be the best help we could do right? But then of course we, or me particularly is not perfect, my brain is isn't perfect either... i tried to shift my brain, but that's not easy either. and it is very taxing too... i wonder sometimes i think i'm getting the disease too. caregivers needs help and needs a break..i think this is what i'm lacking. i thought before that it's alright, i could do it , i have to focus on my job ...besides it doesn't feel like work to me at all , we visit, i play the piano, i do chores, we play games, we go for a drive in the country... and then i realized i no longer have a social life... i felt i am out of the world if i'm with other groups... i definitely need help. thanks.

    - jane

  • February 10, 2011 8:32 p.m.

    I have a question. I know it can be exhausting for a spouse or child to care for their family member with dementia. It seems like the respite care out there is minimal at best. Would a respite plan that gave the family caregivers a week off at a time (one week on, one week off, one week on, one week off) give them the rest they need to stay healthy and happy themselves and give good quality care to their loved one? I do adult foster care and am thinking of offering this kind of service, but I'd like some feedback. I know it wouldn't work for everyone, but for those it would work for, I thought it would be nice for the person who has the dementia to have 2 advocates and for the main caregiver to have someone supporting them who has some idea what they're dealing with. This isn't offered anywhere. My next request is for ideas you have for services you need that you can't find anywhere. Thanks for your input, it's much appreciated.

    - Pam

  • February 7, 2011 12:47 a.m.

    My 76 year old father has battled dementia for a number of years, with the last 3 being the worst. He is retired from the Air Force and in the last year my mom could no longer care for him (after a valient effort) at home and now he's been in a nursing home for about 1 yr. Me and my siblings all work (alot) and do our best to help too. He has had great mental awareness, but the physical has plummeted. He's been bedridden for some time. Im writing this tonight as he is the ICU and now he is battling end of life -infection, respitatory fail, kidney failure. He may have a few days at best. It is heartbreaking. He didn't get the best of care in home - but it was the best I could find him from the Veteran's List of "approved" ones. I visited 5 of them which most were shockingly bad (and poorly rated). My mother has attended to him most of the day even while in the nursing home. This note is a tribute to him as he has suffered for so long and to my mother who has cared and loves him so deeply. She has demonstrated the true meaning of love in every respect. And he adored her. He is a the end of life, and we hope we can help him die as comfortably as possible. He has suffered so much. I have found that the healthcare and VA system has failed him. It is up to each individual person to educate yourself as much as possible to provide your loved one with the best care possible. I know there are some great caregivers out there, but we have had not so good experiences.

    - Cindy

  • January 27, 2011 7:02 p.m.

    I have just started a nursing assistant program and am doing my clinicals at a wonderful nursing home. The levels of dementia and/or alzeheimers are vast. If you have a loved one in a nursing home, please, please, please visit them often. They may not remember your name, but they still enjoy being embraced lovingly. Unfortunately, the amount of attention each resident requires from a caregiver, leaves little time for extra attention. Although they are well taken care of, they are lonely. Please don't forget them when they need you the most, even if they were not ideal family members in the past. They are still human beings who need love and attention. You may be in their shoes some day. And please also remember to thank the caregivers. They work extremely hard and are severly underpaid. This disease truly robs people of quality of life so it is important to remember that they are still beautiful people inside the shell you no longer recognize.

    - Veronica

  • January 21, 2011 9:13 p.m.

    My husband was recently (within the past few months) diagnosed with frontal temporal dementia. This came about because of abrupt and severe behavior changes (giving away enormous amounts of money that we could ill afford to people he knew little of, acting in secretive ways, having delusional stories, having several accidents) which were very uncharachteristic of him. He started to 'feel different' a couple of years ago and we started to notice some subtle changes in him, but until we found out about the money we had no idea how serious his issues were. After going through psychological testing, numerous scans, labs, and neuropsych tests we had our answers from a PET scan tht showed brain abnormalities. Now what we need is answers as to the cause and some help as to where to go from here. No one seems to be able to give us any answers right now and I not only have to keep working, but am also carrying the burden of taking care of our three children and a household. It's even harder with my father undergoing chemotherapy. I have applied for Social Security Disability for him, but of course that takes time and I am told you are always denied the first time you apply, so it will be months before I see any relief ahead. The only thing I can do is pray, write, and go to the gym... oh, and I am also fixing up my house to sell, as we only have one income now, we cannot afford the house we have for much longer let alone the multilevels (did I mention my husband falls also)?

    - Sara

  • January 21, 2011 12:14 p.m.

    I am in my early 70's. I have always had an active and well-functioning mental capacity(three earned college degrees from respectable universities). Three years I suffered two strokes in about 30 days. Looking at the first brain scans, the doctors thought I would have some physical deficits as I recovered, including loss of use of my right arm. They were amazed when I recovered completely, to the point that I could go back to active horse-back riding (foxhunting). However, it has become apparent that I have some cognitive deficits since recovering. Primarily an inability to promptly recall names and terms that are very familiar to me. In most cases the thing I am trying to recall will suddenly come to me (within minutes so when I needed it. Perhaps as a result of my mental problems (perhaps not) I did some things (before and) after my stroke that justified my wife of more than 30 years to end our marriage. Now I am contemplating remarriage, but I do not want to impose my mental problems on anyone, least of all someone I love. I need to determine, if possible, wheher the confusion I am experiencing is an early indication of Alzheimer's or some other sort of serious dementia. I expect to discuss this with my doctor at my physical next week, but right now I'm just trying to learn what I can about my situation. Any help is appreciated.

    - Mack

  • January 13, 2011 10:37 a.m.

    About 2 years ago, my 77 yr old mother was diagnosed with vascular dementia as a result of TIA's (mini strokes). Her short-term memory has been greatly affected as well as a huge personality change. She is a retired nurse, extremely intelligent & was a very engaging, articulate individual. We used to joke that we could not get a word in edgewise but what she said was usually worth listening to (whether you were ready to hear it or not). Now she is often disconnected, unable to give an opinion and withdrawn. A once avid reader & intiator of a Book Club is now unable to get through a book. She has lost confidence & is unable to plan or participate in daily rituals (i.e. making a grocery list & shopping). Yet she still rallies on occasion. She is on Reminyl (24mg) & an antidepressant as well as heart & cholesterol medication. We feel she is no longer able to live alone (for the past year she has been spending 4 days/3 nights a week with me & my family & 3 days alone in an apartment she's lived in for 15 years with my sister living next door). She has just been accepted into an assisted living apartment complex (after a year and a half on the waiting list). I'm looking for helpful hints on successfully transitioning her as both my mom & I are nervous about the move next month.

    - Tracey

  • January 12, 2011 1:48 a.m.

    My wife has been diagnosed by a well respected neurologist, after an MRI and a PET scan, with FTD. I initiated a course of doctors' appointments that led to the above tests because she presented significant episodes of short-term memory lapses or loss. I have not seen any of the symptoms associated with FTD in the available literature, such as language or word problems. I continue to read that memory loss in early stages does not fit the FTD pattern. Is the diagnosis possibly incorrect?

    - Keith

  • January 10, 2011 2:33 p.m.

    Sweet stepmother has alzheimers, she's 86. Dad fell at Thankgsiving and since then has vascular dementia. It has been awful. Hospital (PTSD, he hallucinated, was angry, hitting, hates me), then rehab (actions the same). I am his caregiver; Stepmother has 4 children helping. When Dad and Stepmother "start" on something, too many people in the house, "we can take care of ourselves," they are insurmountable. Dad and stepmother are madly in love with eachother for last 37 years, and they still are. I work downtown Chicago and live in suburbs, 1-1/2 hr door to door. We have 24/7 caregiver but if she needs something - I'm downtown. I used to look very young for 59 yrs. - I aged 5 years since Thanksgiving. Dad still hates me. He called 911 last week 3 times to swear out a felony complaint against me. He's retired policeman, Korean war vet. Thank you for listening.

    - SandyHT

  • January 8, 2011 7:43 p.m.

    I am not sure how to handle this. My brother & I think that our mom may have alzheimer's. My mom is only sixty years old but is starting to see things that aren't there, is spending money all of a sudden as if she has an endless supply, and is not taking care of herself(hygiene) unless my brother stays on her constantly to shower & brush her teeth. Alzheimer's runs in the family. My great grandmother had it & so did my mom's aunt. I think that my mother seems too young to have this disease but because of the heredity, I think that's what this is. I was wondering if a trauma could possibly bring on something like this sooner than usual. My sister had comitted suicide two years ago and then last year my graandfather had passed. My mom was his caretaker. Also, my mom recently retired a few months ago from her job & that's when all of this unusal behavior began. It kills me to think that my mom is loosing her mind. I really don't know how to handle this. I feel heartbroken.

    - Nicole

  • January 4, 2011 9:40 a.m.

    My husband recently was diagnosed with MCI. We have tried in vain to find any kind of support for him. Groups are all for caregivers. He functions independently but needs help dealing with this devastating illness.

    - Deb

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