Sharing information & services we use for our special needs child, Will, and our elderly parents. Exploring more services & inviting others to share their stories with us.
Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts
Sunday, August 3, 2014
More interventions and issues to address when dealing with Alzheimer's.
I received my latest copy of 'Healthy Living' from Sams Club. There was an informative article titled "Answering the Challenge of Alzheimer's Disease" by Michele Mongillo. There is so much information out there that it sometimes gets confusing, overwhelming, overloading. This particular article struck me as being informative because it hit upon a few things that I don't remember seeing in other places.
As stated in other articles, we are reminded that Alzheimer's shows itself in behavioral difficulties as well as in medical conditions. Some of the behaviors may be repetitive motions, outbursts, physical aggression and it is best to remember that these actions are not intentional. Also coming into play with this behavior is pain, poor sleep, hunger, thirst, feeling lost or not belonging. Michelle lists a few key interventions for caregivers:
•Always stay calm, talk softly and slowly.
•Attempt to turn repetitive motions into an activity. If the loved one is repeatedly folding a napkin, provide a small basket of washcloths or clothing items to fold.
•Try to determine if the person is having some type of pain. They may not be able to communicate this to the caregiver.
•Avoid overcrowded situations, increased activity and even multiple people in the home, as they can be overwhelming and confusing for a person with dementia.
•Don’t argue with the loved one; rather, try to validate their feelings and get them engaged in some type of activity.
•Simplify daily tasks. If the person is calmer in the morning, then schedule appointments/errands during those hours.
See the rest of the story on "care 4 elderly parents".
Monday, September 30, 2013
Mom or Dad want to play a game with Elvis?
(picture from ROS site) The ROS Play Therapy System now has Elvis on its variety of games designed for those disabled with Alzheimer's, Parkinsons, and other cognitive or physical issues. Read more here..
Wednesday, August 28, 2013
Alzheimer's & Eating.
(picture from Sams Club site) In reading our copy of 'Healthy Living Made Simple' from Sams Club, the September/October 2013 edition, I found they offer some advice about meals.
While I have not found this magazine online yet to refer to, I thought I would share an article in it titled "Alzheimer's and eating: a unique burden", by Michele Mongillo, RN. All of us have heard how this disease changes people - their behavior, memory, thinking. It affects daily life. Nutrition can be an issue; we have all heard that certain foods MAY slow it down, there is no fix. But the article states, that it is best if the elderly person can eat a well-balanced diet - to stay strong and maintain a healthy weight. Of course, there is always the fact that your family member may not remember if they ate - been there!!
The article says that if you are the one planning the meal, try to offer a wide selection of fresh fruits, vegetables, whole grains, and lean proteins. Cut the food into bite sized pieces -- makes it easy to pick up with a utensil or fingers. Plus it makes the food easy to chew and swallow. Allow foods with high water content (since they may not drink enough) like soups, fruit, & smoothies. If the person has visual issues, there may be problems distinguishing food on their plate -- limit the amount and types of food being served. Even if it is a favorite, they may not recognize it. Here too, it may be helpful to avoid dishes, tablecloths, napkins that have a busy design.
If you are going out, places with a lot of noise might be too distracting, so choose one with a quieter atmosphere. If at home, eat meals without the radio or TV.
Some of this may be trial and error. From personal experience now -- if there are any other medical issues, you may want to talk to your doctor or dietitian. Mom had to have low-sodium foods, she had a heart condition and high blood pressure. I had to watch her potassium intake (among other things) with her being on dialysis. We had to change from her favorite drink, Ensure, to Nepro (which she did not like as much but we found ways to doctor it up). Several talks with the dietitian at the dialysis center, and many handouts later, we were able to shop for foods and herbs to make things taste better.
I did find a similar post on the Alzheimer's Association website. Read here.
While I have not found this magazine online yet to refer to, I thought I would share an article in it titled "Alzheimer's and eating: a unique burden", by Michele Mongillo, RN. All of us have heard how this disease changes people - their behavior, memory, thinking. It affects daily life. Nutrition can be an issue; we have all heard that certain foods MAY slow it down, there is no fix. But the article states, that it is best if the elderly person can eat a well-balanced diet - to stay strong and maintain a healthy weight. Of course, there is always the fact that your family member may not remember if they ate - been there!!
The article says that if you are the one planning the meal, try to offer a wide selection of fresh fruits, vegetables, whole grains, and lean proteins. Cut the food into bite sized pieces -- makes it easy to pick up with a utensil or fingers. Plus it makes the food easy to chew and swallow. Allow foods with high water content (since they may not drink enough) like soups, fruit, & smoothies. If the person has visual issues, there may be problems distinguishing food on their plate -- limit the amount and types of food being served. Even if it is a favorite, they may not recognize it. Here too, it may be helpful to avoid dishes, tablecloths, napkins that have a busy design.
If you are going out, places with a lot of noise might be too distracting, so choose one with a quieter atmosphere. If at home, eat meals without the radio or TV.
Some of this may be trial and error. From personal experience now -- if there are any other medical issues, you may want to talk to your doctor or dietitian. Mom had to have low-sodium foods, she had a heart condition and high blood pressure. I had to watch her potassium intake (among other things) with her being on dialysis. We had to change from her favorite drink, Ensure, to Nepro (which she did not like as much but we found ways to doctor it up). Several talks with the dietitian at the dialysis center, and many handouts later, we were able to shop for foods and herbs to make things taste better.
I did find a similar post on the Alzheimer's Association website. Read here.
Tuesday, August 20, 2013
Early Intervention: Good for the Young and the Old
Early Intervention in the school system is a wonderful program for the very young.
With school starting and the new screening schedule sent to us screeners (I have been a certified pre-school and kindergarten screener for about 5 years), I thought it a good idea to remind families with young children about this great service. Thinking about it more, early intervention is good for families taking care of elderly parents as well.
Early intervention applies to children of school age or younger who are discovered to have or be at risk of developing a handicapping condition or other special need that may affect their development. Early intervention consists in the provision of services such children and their families for the purpose of lessening the effects of the condition. Early intervention can be remedial or preventive in nature--remediating existing developmental problems or preventing their occurrence.
Early intervention may focus on the child alone or on the child and the family together. Early intervention programs may be center-based, home-based, hospital-based, or a combination. Services range from identification--that is, hospital or school screening and referral services--to diagnostic and direct intervention programs. Early intervention may begin at any time between birth and school age; however, there are many reasons for it to begin as early as possible. (from 'Kids Source Online)
Both our oldest and middle boys started in a local program pretty much as soon as they moved in with us since they were starting to be enrolled while in foster care. If you have any concerns about your child, you should start with your pediatrician. In MY opinion, it is best to make sure your pediatrician feels that there may be a developmental concern and he/she can refer you to an agency or school program. Our 2 boys went to a program in a facility that is basically for developmentally delayed children and adults. But after a year maybe a year and a half, they moved onto pre-schools. Our oldest (who still wants to be anonymous) continued on through the regular school curriculum. Willie continued on through Special Ed with an IEP. Either way, the Early Intervention program was great. I was able to stay during their sessions and watch and they loved it as the teachers 'played with them' and worked with their plan.
The same concept of early intervention is good for the elderly. My mother was concerned as she got older and started developing slight tremors since Parkinsons runs in the family and was forgetting things occasionally. We also have dementia, Alzheimer's, cancer, heart conditions, diabetes -- my future should be an interesting roll of the dice -- maybe whatever I get, my mind may be at a point that I won't care!! Close to the end of her time, she did have mental issues that we were not sure if it was dementia or delirium (see said post "Delirium or Something Else").
Anyway, what I was getting to WAS mom decided that she wanted to get checked out and was referred to a local Memory and Aging Clinic dealing with the mental status in the elderly. We went several times over a couple of years to get tested, reviewed, have a check-up. The doctors were wonderful, very easy to talk to, work with, patient, pleasant. They made the experience very comfortable. While mom was being tested, I was filling out a questionnaire dealing with how I see her going through her daily life skills. The testing did not take long and it was some visual and some memory testing. Also there was an exam for the Parkinson's.
According to them, there was no worry about the Parkinson's and the level of forgetfulness was normal for someone in her a 80's. This put mom's mind at ease. It was great because they were always available for talking on the phone if we had any concerns or questions. The doctors said that if at any of her future visits they found that there was evidence of dementia or Alzheimer's, there are very good new medicines that have slowed its progression. The doctors were very confident in trying these meds. They said there has been good results with these meds when given at the first signs of Alzheimer's.
We have tried talking to my in-laws since they have issues but they will not budge on going. I suggested to a friend whose mom is having memory issues to try and take her. I don't know if they don't want to find out there may be a problem or they don't want to go to a clinic based in a hospital known for being a place for people with mental issues and addictions. Either way, it is better to go to get checked out no matter where the program is than to worry your family about your condition. If there are meds out there that help, take them and you can spend more quality time with your family.
With school starting and the new screening schedule sent to us screeners (I have been a certified pre-school and kindergarten screener for about 5 years), I thought it a good idea to remind families with young children about this great service. Thinking about it more, early intervention is good for families taking care of elderly parents as well.
Early intervention applies to children of school age or younger who are discovered to have or be at risk of developing a handicapping condition or other special need that may affect their development. Early intervention consists in the provision of services such children and their families for the purpose of lessening the effects of the condition. Early intervention can be remedial or preventive in nature--remediating existing developmental problems or preventing their occurrence.
Early intervention may focus on the child alone or on the child and the family together. Early intervention programs may be center-based, home-based, hospital-based, or a combination. Services range from identification--that is, hospital or school screening and referral services--to diagnostic and direct intervention programs. Early intervention may begin at any time between birth and school age; however, there are many reasons for it to begin as early as possible. (from 'Kids Source Online)
Both our oldest and middle boys started in a local program pretty much as soon as they moved in with us since they were starting to be enrolled while in foster care. If you have any concerns about your child, you should start with your pediatrician. In MY opinion, it is best to make sure your pediatrician feels that there may be a developmental concern and he/she can refer you to an agency or school program. Our 2 boys went to a program in a facility that is basically for developmentally delayed children and adults. But after a year maybe a year and a half, they moved onto pre-schools. Our oldest (who still wants to be anonymous) continued on through the regular school curriculum. Willie continued on through Special Ed with an IEP. Either way, the Early Intervention program was great. I was able to stay during their sessions and watch and they loved it as the teachers 'played with them' and worked with their plan.
The same concept of early intervention is good for the elderly. My mother was concerned as she got older and started developing slight tremors since Parkinsons runs in the family and was forgetting things occasionally. We also have dementia, Alzheimer's, cancer, heart conditions, diabetes -- my future should be an interesting roll of the dice -- maybe whatever I get, my mind may be at a point that I won't care!! Close to the end of her time, she did have mental issues that we were not sure if it was dementia or delirium (see said post "Delirium or Something Else").
Anyway, what I was getting to WAS mom decided that she wanted to get checked out and was referred to a local Memory and Aging Clinic dealing with the mental status in the elderly. We went several times over a couple of years to get tested, reviewed, have a check-up. The doctors were wonderful, very easy to talk to, work with, patient, pleasant. They made the experience very comfortable. While mom was being tested, I was filling out a questionnaire dealing with how I see her going through her daily life skills. The testing did not take long and it was some visual and some memory testing. Also there was an exam for the Parkinson's.
According to them, there was no worry about the Parkinson's and the level of forgetfulness was normal for someone in her a 80's. This put mom's mind at ease. It was great because they were always available for talking on the phone if we had any concerns or questions. The doctors said that if at any of her future visits they found that there was evidence of dementia or Alzheimer's, there are very good new medicines that have slowed its progression. The doctors were very confident in trying these meds. They said there has been good results with these meds when given at the first signs of Alzheimer's.
We have tried talking to my in-laws since they have issues but they will not budge on going. I suggested to a friend whose mom is having memory issues to try and take her. I don't know if they don't want to find out there may be a problem or they don't want to go to a clinic based in a hospital known for being a place for people with mental issues and addictions. Either way, it is better to go to get checked out no matter where the program is than to worry your family about your condition. If there are meds out there that help, take them and you can spend more quality time with your family.
Monday, July 22, 2013
5 Issues That Caregivers May Come Up Against.
Caring.com wrote about 5 things that can sabotage a family caregiver and possible solutions. All are things that you hear people talk about constantly; things that I too came up against. Being an only child, I found it hard sometimes to find someone to take my place with mom -- my boys were teenagers, with one being special needs, so they found it uncomfortable when they would stay and have to POSSIBLY contend with a bathroom issue. They were good with the helping of snacks or the extra hand or arm to move around but the fear was there for personal toileting. Needless to say, I never wandered too far. I had a couple of female friends who could help, but they had their own family issues.
Anyway - back to the Caring.com story. Here are the 5 issues that 'can sabotage family caregivers':
1 - lack of privacy: there is mental and physical privacy. There should be spots to go to for personal time and time for the rest of the immediate family outside of the person/parent you are taking care of. This may be hard to do if the parent/person is living with you. Also if this person has dementia or Alzheimer's, there are times when the loved one may do inappropriate things due to the his/her mental status, disinhibition. Possible solutions?? If possible, the live-in person may be able to have his/her own space to sleep, watch TV, or make household rules for using TVs, radios, the kitchen, etc. Make sure you make time for your own immediate family (the parent or whoever does not always come first) and make sure you still take vacation time - use respite care or other relatives to share in the caretaking. If there is a problem with disinhibition or aggression, use locks or check with the physician to discuss medications or ways to help with these issues. Depending on how serious these become and the safety of the rest of the family, you may need to consider placement.
2 - sleep deprivation: for the live-in elderly family member or the caregiver, this can be hard on everyone's mental and physical health. The elder whose sleep issues are addressed will experience better mood, more energy, and less pain; sleep is closely connected with all three conditions. And the caregiver who makes his or her own sleep a priority will be better able to cope with caregiving stresses and will have more energy for every part of life. Possible Solutions?? No stimulating beverages, electronics, have a dark and quiet room with a bed. Check medications with a doctor. While a mixed-up sleep cycle is NOT normal for aging, it may be an issue with dementia.
3 - the lone soldier syndrome: a lot of people feel like they are on their own, without a way to 'vent' or be themselves. Possible solutions?? Needing other people to help is NOT a sign of weakness - ask!!Join a caregivers group either through a local organization or online. See a counselor if you find yourself depressed. Finally - again - find ways to get time for yourself on a regular basis.
4 - not anticipating what is coming next: you need to step back and see the big picture and not just handling issues as they come uup. Possible solutions?? Make contingency plans - if this happens, then that should happen. Make a list of people or organizations to contact if you need an answer. Talk to your parent's doctor about their condition and what may happen down the
road; ask others who done the same thing. If there is dementia, check Caring.com program for advice. Consider a support group.
5 - overwhelming care tasks: heavy lifting, incontinence, and wandering take their toll. Possible Solutions?? Check with your parent's doctor for possible help with incontinence. Find locks, alarms or ways to reduce anxiety for wandering. Get help in the home and brainstorm with others for ways to solve your issues. Don't feel guilty if you are thinking about placement out of the home.
Think about your issues and I hope that some or all of the above can help or lead you to help.
Anyway - back to the Caring.com story. Here are the 5 issues that 'can sabotage family caregivers':
1 - lack of privacy: there is mental and physical privacy. There should be spots to go to for personal time and time for the rest of the immediate family outside of the person/parent you are taking care of. This may be hard to do if the parent/person is living with you. Also if this person has dementia or Alzheimer's, there are times when the loved one may do inappropriate things due to the his/her mental status, disinhibition. Possible solutions?? If possible, the live-in person may be able to have his/her own space to sleep, watch TV, or make household rules for using TVs, radios, the kitchen, etc. Make sure you make time for your own immediate family (the parent or whoever does not always come first) and make sure you still take vacation time - use respite care or other relatives to share in the caretaking. If there is a problem with disinhibition or aggression, use locks or check with the physician to discuss medications or ways to help with these issues. Depending on how serious these become and the safety of the rest of the family, you may need to consider placement.
2 - sleep deprivation: for the live-in elderly family member or the caregiver, this can be hard on everyone's mental and physical health. The elder whose sleep issues are addressed will experience better mood, more energy, and less pain; sleep is closely connected with all three conditions. And the caregiver who makes his or her own sleep a priority will be better able to cope with caregiving stresses and will have more energy for every part of life. Possible Solutions?? No stimulating beverages, electronics, have a dark and quiet room with a bed. Check medications with a doctor. While a mixed-up sleep cycle is NOT normal for aging, it may be an issue with dementia.
3 - the lone soldier syndrome: a lot of people feel like they are on their own, without a way to 'vent' or be themselves. Possible solutions?? Needing other people to help is NOT a sign of weakness - ask!!Join a caregivers group either through a local organization or online. See a counselor if you find yourself depressed. Finally - again - find ways to get time for yourself on a regular basis.
4 - not anticipating what is coming next: you need to step back and see the big picture and not just handling issues as they come uup. Possible solutions?? Make contingency plans - if this happens, then that should happen. Make a list of people or organizations to contact if you need an answer. Talk to your parent's doctor about their condition and what may happen down the
road; ask others who done the same thing. If there is dementia, check Caring.com program for advice. Consider a support group.
5 - overwhelming care tasks: heavy lifting, incontinence, and wandering take their toll. Possible Solutions?? Check with your parent's doctor for possible help with incontinence. Find locks, alarms or ways to reduce anxiety for wandering. Get help in the home and brainstorm with others for ways to solve your issues. Don't feel guilty if you are thinking about placement out of the home.
Think about your issues and I hope that some or all of the above can help or lead you to help.
Saturday, June 15, 2013
A Pacemaker for the Brain
(picture from the ADvance Study website)
Two local hospitals, Butler Hospital & Rhode Island Hospital, will begin testing the effects of deep brain stimulation, or DBS, as a treatment for those with Alzheimer's Disease. According to the press release, this is a disease affecting more than 5 million people in the US and has no cure; they are hoping to investigate the safety and effect of DBS on memory loss and cognition. It is also called a 'pacemaker for the brain',using an implanted electrical device to stimulate a part of the brain. Read on...
Two local hospitals, Butler Hospital & Rhode Island Hospital, will begin testing the effects of deep brain stimulation, or DBS, as a treatment for those with Alzheimer's Disease. According to the press release, this is a disease affecting more than 5 million people in the US and has no cure; they are hoping to investigate the safety and effect of DBS on memory loss and cognition. It is also called a 'pacemaker for the brain',using an implanted electrical device to stimulate a part of the brain. Read on...
Tuesday, June 11, 2013
Alzheimer's - Facts and Myths.

Tuesday, April 16, 2013
Parkinson's Disease.
APRIL IS PARKINSON'S AWARENESS MONTH.
Both my grandfather and now my uncle have this disease. My grandfather was diagnosed in the late 1980's (he died 1992, he was 89); my uncle within the past month. I don't remember any medication being given to my grandfather; my uncle just started on one and seems to be reacting well to it. He is also undergoing chemo treatments. Lovely combination!!!
According to the Parkinson's Disease Foundation, about 1 million Americans have the disease; 96% are diagnosed after the age of 50. It is the 14th leading cause of death according to the Center for Disease Control.
Parkinson's is not all about tremors - People with Parkinson’s disease may have other motor problems such as rigidity, issues with posture, and overall slowness of movement. Furthermore, Parkinson’s disease can cause mental and cognitive problems as well.
(picture from A Place for Mom site) People with Parkinson’s may have difficulty with planning, problem solving, and other complex tasks. Parkinson’s disease is even a cause of memory loss and dementia.
Recently,our administration awarded money to study the brain, called the BRAIN Initiative which will hopefully develop strategies to fight Alzheimer's and Parkinson's.
There is a free toolkit you can download. For a detailed treatment with medications and therapies, take a look at Parkinson's Disease in the Elderly from the archives at the site of 'A Place for Mom'.
Both my grandfather and now my uncle have this disease. My grandfather was diagnosed in the late 1980's (he died 1992, he was 89); my uncle within the past month. I don't remember any medication being given to my grandfather; my uncle just started on one and seems to be reacting well to it. He is also undergoing chemo treatments. Lovely combination!!!
According to the Parkinson's Disease Foundation, about 1 million Americans have the disease; 96% are diagnosed after the age of 50. It is the 14th leading cause of death according to the Center for Disease Control.
Parkinson's is not all about tremors - People with Parkinson’s disease may have other motor problems such as rigidity, issues with posture, and overall slowness of movement. Furthermore, Parkinson’s disease can cause mental and cognitive problems as well.

Recently,our administration awarded money to study the brain, called the BRAIN Initiative which will hopefully develop strategies to fight Alzheimer's and Parkinson's.
There is a free toolkit you can download. For a detailed treatment with medications and therapies, take a look at Parkinson's Disease in the Elderly from the archives at the site of 'A Place for Mom'.
Signs of Alzheimer's That Can Show Up Before Memory Loss.

Early sign of dementia #1: Personality change
A warm, friendly loved one may seem to morph into a bit of a grouch -- at first occasionally, and then increasingly. A gregarious person still jokes and talks a lot but begins to say inappropriate things or make odd accusations. A mild-mannered loved one begins cursing. All of these are examples of the kinds of personality changes that can predate memory loss in someone with dementia. Often, it's only later that friends and family look back and realize that behaviors they found off-putting or upsetting weren't intentional but related to the Alzheimer's.
Early sign of dementia #2: Problems with executive functioning
Trouble carrying out basic, familiar tasks can creep up slowly but surely. The person may, for example, have difficulty doing something that involves multiple steps, like following written directions or instructions. A longtime cook may avoid complicated recipes. A hobbyist may simplify the form of his or her craft.
Other hallmark trouble areas: making plans and not following through, whether for a vacation or an activity. Not tracking bills. Not being able to solve simple problems, such as mending a broken piece of machinery he or she could once fix easily.
Early sign of dementia #3: Vision problems
Problems with depth perception or visual-spatial coordination can precede memory problems. The person may have trouble driving or even walking well without tripping on stairs. It can be hard to judge distances or see contrasts between like colors, which can lead to accidents. In a more severe example of a perception problem, the person may not recognize himself or herself in a mirror or when passing his or her reflection in a building or window on the street.
Early sign of dementia #4: Language problems
Word retrieval and getting out the right words can become apparent before friends and family notice the more common communication problem of repeating stories or questions. For example the person having trouble may stop in the middle of a sentence, unable to think of the next word. (This can happen to anyone, but when it's a sign of dementia, it happens with alarming frequency, and sometimes the person isn't even aware of doing it.) Or the wrong word may come out -- "mouth cleaner" for "toothbrush" or "picture stick" for "TV remote control."
Early sign of dementia #5: Social withdrawal
Early in Alzheimer's disease and other dementias, the person is often well aware that something is amiss, even if he or she isn't exactly sure of the source of the problem. It can be frightening to feel that you're not quite in control of your faculties all of the time. This can cause the person to use more and more energy to stay in self-command. That leaves less energy to interact with others. Sometimes the person isn't even aware that he or she seems to be losing interest in friends and family, because he or she is concentrating so hard on just getting through the day.
Social withdrawal can also be caused by a desire to avoid embarrassment or by depression -- which often develops alongside dementia.
Saturday, March 30, 2013
Cost to Caregivers Relative to Dementia Patients.
I found an article on the "A Place for Mom" website describing what it costs caregivers and/or families in monies, caring for those with dementia. They have facts and figures from the Alzheimer's Association from 2012. I found it amazing that 1 in 3 seniors die with some form of dementia. This write-up has so much information that I think it best if I copy it here.
"Alzheimer’s disease and other forms of dementia have a devastating impact not only on the health of older adults, but also on the well-being of caregivers—and on the government programs tasked with shouldering much of the cost burden. In 2013, the total cost of caring for Americans with Alzheimer’s is expected to rise to $203 billion, about two-thirds of which is accounted for by
Medicare and Medicaid. And that’s just the monetary cost. The non-fiscal impact on families and caregivers is just as staggering, taking its toll on physical and emotional health. We took an in-depth look at the Alzheimer’s Association’s latest annual report, 2013 Alzheimer’s Disease Facts and Figures, and below is a summary of the major facts everyone should know about the current state of Alzheimer’s and dementia in America.
How Many Americans Have Alzheimer’s Disease?
Alzheimer’s disease is the most common type of dementia, but other conditions such as frontotemporal lobe degeneration and Parkinson’s disease can also cause dementia. In 2013, 5.2 million Americans are estimated to have Alzheimer’s disease, 5 million of whom are aged 65 or older. That adds up to 11 percent of adults 65 and older, and 32 percent of people 85 and older who have the disease. The overall numbers for dementia are more difficult to pinpoint, but the Aging, Demographics, and Memory Study (ADAMS) estimates that 13.9 percent of Americans over age 71 have dementia.
The incidence of Alzheimer’s increases dramatically with age, and the overall numbers are expected to rise due to the large baby boomer population reaching age 65. There are a few complicating factors to these numbers, though. The major problem is that, currently, Alzheimer’s disease is under-diagnosed. As many as half of the 5.2 million people with the disease may not know they have it. However, new criteria for Alzheimer’s diagnosis were adopted in 2011, including criteria for detecting Alzheimer’s in the preclinical stage using biomarker tests and other cutting-edge science.
How Many People Die of Alzheimer’s Disease?
Deaths from other major causes have been decreasing, but deaths from AD are on the rise. Alzheimer’s disease is the 6th leading cause of death in America, and the 5th leading cause of death in seniors age 65 and older. But it’s very hard to pinpoint the exact number of deaths from Alzheimer’s. Currently, the CDC only counts those for whom Alzheimer’s is listed as the primary cause of death. However, if someone with Alzheimer’s dies from an acute condition such as pneumonia or malnutrition—conditions that may be a direct result of Alzheimer’s—they may not be included in the tally of AD deaths.
For instance, in 2010, the most recent year for which data is available, 83,494 people died from Alzheimer’s, but approximately 400,000 people died with Alzheimer’s. Also, having Alzheimer’s dramatically increases the likelihood of death, regardless of the recorded cause: 61 percent of people with AD are expected to die before age 80, compared to 30 percent of those unaffected.
A Portrait of Alzheimer’s Caregivers
80 percent of caregivers for those with Alzheimer’s or dementia are unpaid caregivers, usually family members—that translates to more than 15 million people. 62 percent of those are women, and nearly half are taking care of a parent. Caregivers of people with dementia usually assist more extensively than other types of caregivers, helping with mobility, feeding and toileting as well as dealing with behavioral problems associated with dementia. On average, each caregiver provides 21.9 hours of unpaid care per week, for an estimated economic value of $216.4 billion. Many caregivers suffer from high emotional stress, as well as financial strain, job stress and other difficulties, as a direct result of caregiving.
In this year’s Alzheimer’s Association report, special focus was placed on long-distance caregiving. For caregivers of someone with dementia who was 50 years of age or older, about 15% of those must travel an hour or more to reach the care recipient. About one in five long-distance caregivers is a primary caregiver, helping with the same activities of daily life that local caregivers do. However, long-distance caregivers face more pronounced difficulties with coordinating care, communicating with providers and other family members, and handling care expenses, among other things.
The Cost of Dementia Care in America
The number of seniors with dementia is projected to increase over the coming years, so it’s not much of a surprise that the overall amount spent on care is expected to balloon, too. The aggregate cost of care for people with Alzheimer’s is estimated at $203 billion for 2013; Medicare and Medicaid account for $142 billion (about 70 percent) of that amount, while out-of-pocket expenses account for $34 billion.
Per person, that amounts to an average of $45,657 per year of health care dollars spent on dementia sufferers, compared to $14,452 per year for those without dementia. Dementia’s cost can be even higher if the person is in a residential facility. Scary as those numbers may be, experts estimate the overall spending on people with Alzheimer’s or dementia to rise to $1.2 trillion in 2050. The good news is, with accurate knowledge of the situation regarding dementia in America, government agencies, health care providers, caregivers and families will be better able to plan for a future in which the growing number of people with Alzheimer’s can be quickly diagnosed and treated with all the tools currently at our disposal."
"Alzheimer’s disease and other forms of dementia have a devastating impact not only on the health of older adults, but also on the well-being of caregivers—and on the government programs tasked with shouldering much of the cost burden. In 2013, the total cost of caring for Americans with Alzheimer’s is expected to rise to $203 billion, about two-thirds of which is accounted for by

How Many Americans Have Alzheimer’s Disease?
Alzheimer’s disease is the most common type of dementia, but other conditions such as frontotemporal lobe degeneration and Parkinson’s disease can also cause dementia. In 2013, 5.2 million Americans are estimated to have Alzheimer’s disease, 5 million of whom are aged 65 or older. That adds up to 11 percent of adults 65 and older, and 32 percent of people 85 and older who have the disease. The overall numbers for dementia are more difficult to pinpoint, but the Aging, Demographics, and Memory Study (ADAMS) estimates that 13.9 percent of Americans over age 71 have dementia.
The incidence of Alzheimer’s increases dramatically with age, and the overall numbers are expected to rise due to the large baby boomer population reaching age 65. There are a few complicating factors to these numbers, though. The major problem is that, currently, Alzheimer’s disease is under-diagnosed. As many as half of the 5.2 million people with the disease may not know they have it. However, new criteria for Alzheimer’s diagnosis were adopted in 2011, including criteria for detecting Alzheimer’s in the preclinical stage using biomarker tests and other cutting-edge science.
How Many People Die of Alzheimer’s Disease?
Deaths from other major causes have been decreasing, but deaths from AD are on the rise. Alzheimer’s disease is the 6th leading cause of death in America, and the 5th leading cause of death in seniors age 65 and older. But it’s very hard to pinpoint the exact number of deaths from Alzheimer’s. Currently, the CDC only counts those for whom Alzheimer’s is listed as the primary cause of death. However, if someone with Alzheimer’s dies from an acute condition such as pneumonia or malnutrition—conditions that may be a direct result of Alzheimer’s—they may not be included in the tally of AD deaths.
For instance, in 2010, the most recent year for which data is available, 83,494 people died from Alzheimer’s, but approximately 400,000 people died with Alzheimer’s. Also, having Alzheimer’s dramatically increases the likelihood of death, regardless of the recorded cause: 61 percent of people with AD are expected to die before age 80, compared to 30 percent of those unaffected.
A Portrait of Alzheimer’s Caregivers
80 percent of caregivers for those with Alzheimer’s or dementia are unpaid caregivers, usually family members—that translates to more than 15 million people. 62 percent of those are women, and nearly half are taking care of a parent. Caregivers of people with dementia usually assist more extensively than other types of caregivers, helping with mobility, feeding and toileting as well as dealing with behavioral problems associated with dementia. On average, each caregiver provides 21.9 hours of unpaid care per week, for an estimated economic value of $216.4 billion. Many caregivers suffer from high emotional stress, as well as financial strain, job stress and other difficulties, as a direct result of caregiving.
In this year’s Alzheimer’s Association report, special focus was placed on long-distance caregiving. For caregivers of someone with dementia who was 50 years of age or older, about 15% of those must travel an hour or more to reach the care recipient. About one in five long-distance caregivers is a primary caregiver, helping with the same activities of daily life that local caregivers do. However, long-distance caregivers face more pronounced difficulties with coordinating care, communicating with providers and other family members, and handling care expenses, among other things.
The Cost of Dementia Care in America
The number of seniors with dementia is projected to increase over the coming years, so it’s not much of a surprise that the overall amount spent on care is expected to balloon, too. The aggregate cost of care for people with Alzheimer’s is estimated at $203 billion for 2013; Medicare and Medicaid account for $142 billion (about 70 percent) of that amount, while out-of-pocket expenses account for $34 billion.
Per person, that amounts to an average of $45,657 per year of health care dollars spent on dementia sufferers, compared to $14,452 per year for those without dementia. Dementia’s cost can be even higher if the person is in a residential facility. Scary as those numbers may be, experts estimate the overall spending on people with Alzheimer’s or dementia to rise to $1.2 trillion in 2050. The good news is, with accurate knowledge of the situation regarding dementia in America, government agencies, health care providers, caregivers and families will be better able to plan for a future in which the growing number of people with Alzheimer’s can be quickly diagnosed and treated with all the tools currently at our disposal."
Monday, March 25, 2013
Caregiver's Support Kit.
“There are only four kinds of people in this world. Those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.” Rosalynn Carter, Former First Lady (from the National Caregiving Foundation website)
The mission of the National Caregiving Foundation:
is to meet both the direct and indirect needs resulting from the impact of catastrophic diseases on our society. The mission is accomplished by:
· Disseminating educational information
· Distributing support materials that ease the burden of those affected by the diseases
· Increasing public awareness
This foundation offers a FREE support kit for those people who are now taking on caregiving responsibility. Although the foundation has this kit for those families facing Alzheimer's, this Caregiver's Support Kit is appropriate for any family. All you have to do is call the toll free phone number on their site. There is also another number for returning wounded veterans. It is part of the 'Care for Wounded Soldiers' program.
There is also a long list of 'hot line' phone numbers for a wide variety of organizations that many of us can use. Check it out to see if it can help you find help.
The mission of the National Caregiving Foundation:
is to meet both the direct and indirect needs resulting from the impact of catastrophic diseases on our society. The mission is accomplished by:
· Disseminating educational information
· Distributing support materials that ease the burden of those affected by the diseases
· Increasing public awareness
This foundation offers a FREE support kit for those people who are now taking on caregiving responsibility. Although the foundation has this kit for those families facing Alzheimer's, this Caregiver's Support Kit is appropriate for any family. All you have to do is call the toll free phone number on their site. There is also another number for returning wounded veterans. It is part of the 'Care for Wounded Soldiers' program.
There is also a long list of 'hot line' phone numbers for a wide variety of organizations that many of us can use. Check it out to see if it can help you find help.
Thursday, February 21, 2013
Adult Day Care Facilities.

There have been several new adult day care centers in the area. I know a few people who have had their parents attend the programs and they have been pleased and mom and/or dad loved it. I had mentioned it to my mom, figuring once she started feeling better, she could attend one a couple of times a week (we never got to that point). These centers can provide attendees therapies, socialization, activities, exercise, prepared meals. From what I understand, there are social workers there who can assess the adults to see what may be needed and come up with the best plan for them. Many of these centers now will also have programs for those elderly parents who have dementia or Alzheimer's.
You should always go to the facility to visit first; observe the staff, the cleanliness of the rooms, check the bathrooms, ask about their programs. Sometimes there is transportation provided. Ask about nursing care - are there nurses there during the day.
AARP's book "Staying at Home", mentions that you should check with your local agency on aging to check on a facility's licensing. I checked with our local Department of Elderly Affairs and they listed a variety of locations and there were numerous factors to look at. The same site referred to 'Eldercare Locator'. The link will lead you to locator where you put in some information and you find places in your area, hopefully matching your needs. Our local Elderly Affairs website cautions -- while the initial access is free, there may be a charge helping to find a place in your area, so please talk to someone.
Also, check with the facility about fees -- some may be free, some may be based on a sliding scale or full fee. Check to see if Medicaid will help. You have to qualify for Medicaid.
Adult day care services also provide respite for those family caregivers who need a break or let them continue to work.
Friday, February 1, 2013
Looking for Ways to be Healthier and Reduce Dementia Risk?
(picture from 'A Place for Mom' website)
As we all know, dementia & Alzheimer's are diseases that we cannot control. The medical community has been pushing for ALL of us to eat better and smarter to try and avoid MANY types of diseases. So following their recommendations, which I grant changes often sometimes, we could all live healthier lives. So doctors, of course, suggest that our elderly parents eat better (look at any specific diet based on a medical condition - that too can be made better tasting) which will not only help them in general but could help reduce getting a memory loss condition.
Six ways to reduce your dementia risk:
*Live a heart healthy lifestyle - basically it means to exercise regularly, no smoking, eat a heart healthy diet (low fat, low sugar, lots of veggies).
*Use your brain - some researchers feel those with higher educational levels are less apt to get dementia or Alzheimer's. Their 'cognitive reserves' help to beat these diseases. I think a lot of studies have shown that those who stay mentally active can help keep their minds fresh.
*Protect your head - serious head trauma and loss of consciousness can aid in the future risk of Alzheimer's. Wear your seat belt, a bike helmet, and make sure homes are safe for those who may have eye or mobility problems.
*Moderate your alcohol use - the study says it found that in 2008, many dementia cases stem from alcohol abuse. It also reports that if you drink red wine for cardiovascular reasons, now it seems non-alcoholic red wine is the better way to go.
*Reduce stress and spend more time with friends - the Alzheimer's Association says it is not quite sure why an active social life and mental stimulation seems to protect the brain but it does. The active social life also helps longevity, happiness and good health.
*Get enough sleep - 'A September 2012 study found strong evidence indicating that the sleep-wake cycle helps to clear the brain of the amyloid plaques that are thought to cause Alzheimer’s, and another study from October 2012 found that healthy adults who report trouble sleeping have an increased risk of developing Alzheimer’s in the future. Research on sleep and memory that was published only a few days ago in the journal Nature Neuroscience seems to further affirm that when older people sleep poorly it can prevent them from “storing” memories and lead to dementia symptoms.' Strong words - something to think about. Just remember - you have to remember to think about it!!! Which is why we should all be doing the above.
Testing for Alzheimer's.
'A Place for Mom' had an article reviewing information on Alzheimer's testing. This disease is similar to other mental diseases and in the past, it was only through posthumous examination. Now when seeing the signs of Alzheimer's, there may be some testing available to help diagnose.
Standard testing is: 1) physical and neurological - check blood & urine; see how the patient walks; check vision, hearing, reflexes, and balance. 2) cognitive - solving simple problems & also looking at short and long term memory testing. 3) neuropsychological - time intensive testing of memory and thinking done by a psychiatrist or psychologist. (picture from 'A Place for Mom' website)
There are new tests, identifying biomarkers, that maybe coming out which could help detect the disease early on. So scientists are working on: 1) brain imaging to look for changes - MRI, CT, PET; 2) cerebralspinal fluid protein levels - this is still being researched but it would only require a spinal tap; 3) check for proteins in the blood - looking for biomarkers in blood, urine, & the eye lens; 4) genetic markers - even though many markers have been identified, this is still mostly for research yet.
As much as everyone wants to run out and get mom/dad tested, many of these tests are NOT covered by insurance and are costly. The article mentions that genetic testing has its own risks and then the findings may affect insurance eligibility.
My mom went to a local Memory & Aging Clinic at a hospital that deals with many mental diseases. She went through a battery of mental testing while I filled out a large questionnaire. The findings at the time were good - she was 80 and her 'forgetfulness' was normal. But she did return a few times for check-ups. In my opinion, it is great to sit down with a doctor who is specialized with this type of mental disease, best to know 'yes' or 'no' rather than be guessing. Feel free to check previous post - "Delirium or Something Else".
Standard testing is: 1) physical and neurological - check blood & urine; see how the patient walks; check vision, hearing, reflexes, and balance. 2) cognitive - solving simple problems & also looking at short and long term memory testing. 3) neuropsychological - time intensive testing of memory and thinking done by a psychiatrist or psychologist. (picture from 'A Place for Mom' website)
There are new tests, identifying biomarkers, that maybe coming out which could help detect the disease early on. So scientists are working on: 1) brain imaging to look for changes - MRI, CT, PET; 2) cerebralspinal fluid protein levels - this is still being researched but it would only require a spinal tap; 3) check for proteins in the blood - looking for biomarkers in blood, urine, & the eye lens; 4) genetic markers - even though many markers have been identified, this is still mostly for research yet.
As much as everyone wants to run out and get mom/dad tested, many of these tests are NOT covered by insurance and are costly. The article mentions that genetic testing has its own risks and then the findings may affect insurance eligibility.
My mom went to a local Memory & Aging Clinic at a hospital that deals with many mental diseases. She went through a battery of mental testing while I filled out a large questionnaire. The findings at the time were good - she was 80 and her 'forgetfulness' was normal. But she did return a few times for check-ups. In my opinion, it is great to sit down with a doctor who is specialized with this type of mental disease, best to know 'yes' or 'no' rather than be guessing. Feel free to check previous post - "Delirium or Something Else".
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4 Signs of Caregiving Stress Overload
ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink
Ranting
You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.
A Caregiver's Poem
I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!
(picture from Caregivers Blog)
I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.
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