What is Dementia

What is dementia? The short answer is that it is any deterioration of the brain that causes regression into perhaps a childlike or unpredictable state of mind. This article will present a laymans observations of the condition.
1. Overview:
Dementia can be caused by a number of different diseases, such as Alzheimer's, Pick's disease or simply aging. This article will mainly cover Pick's disease, as close observance was made of a patient suffering from this condition, with the observations starting 10 years before the onset of the disease, when the patient was in perfect health, and continuing until his death. Many of the symptoms and behaviour caused by the disease are similar across all types of dementia.
2. Physical causes and effects.
Pick's disease is a deterioration of the frontal lobe of the brain. Alzheimer's apparently affects the back of the brain. Certain areas of the brain seem to break down into a fluid. This is a process, during which more and more of the brain's functions are impaired or destroyed. Depending on the individual, this could first affect his emotions, memory and inhibitions, and as the disease progresses, it starts affecting the involuntary functions such as bladder, renal, breathing, heart and so on. Eventually adult nappies have to be worn. Weight gain can occur unless his eating is closely controlled, but in a home situation this can be almost impossible. Even with controlled eating, the changes in the body also cause weight gain.
3. Early symptoms.
Short term memory loss is an early symptom, coupled with out of character behaviour. May take twice as long to go to the store up the road. A man gives the impression of "having an affair" as he may disappear for quite a few hours and have no explanation as to where he was. Will find it gradually more difficult to tackle familiar everyday tasks like fixing a kettle or sorting out the garden.
4. Behavioural changes.
Pick's disease is closely related to Alzheimer's disease, but with slightly differing symptoms. The patient is usually less aggressive. He regresses to childlike behaviour where he likes to "go for a ride," finds boyish things like big buses and trains fascinating. he has no sense of responsibility and does not worry about finances or traffic fines. Driving rapidly deteriorates to a dangerous and reckless level. Spends money with gay abandon. Chats up ladies with no inhibitions, even though married. Totally forgets anniversaries and shows no interest in them. Has little or no emotions, especially loving or kind acts towards his spouse, but is otherwise happy and carefree. Will wander off and get lost within minutes if not watched. Develops compulsive behaviour: the patient incessantly combed his hair.
5. How to care for the patient.
The patient must, of course, be treated with respect, but since they are childlike, a very firm approach must be used towards them. They must be told in no uncertain terms what to do, and the threat of removal of privileges seems to help in controlling their behaviour. They must be kept busy with things that they can do, such as polishing shoes, making beds, painting - one needs to try them with a task and see how they manage, bearing in mind that their abilities are constantly changing with time. Don't let them drive if they are unable to.
6. Outlook.
Sufferers of Pick's disease usually live for 4 to 7 years after diagnosis. Alzheimer patients can live for up to 28 years after diagnosis. If the cause is simply aging, it appears to shorten the lifespan, but it's hard to tell if it is the dementia or simply the natural course of old age. Great strides have been made in the medication available to treat these diseases, and a large amount of government money has been allocated to research.
5. Help and Support groups for carers.
As this sort of disease is quite widespread and common, there are numerous support groups and helpers, wherever you may live. Often a search of the phone book or a Google search will yield results. Assistance is definitely needed, as the person caring for a patient of this nature can become totally exhausted, especially as the disease can last for 10 or 15 years. There are institutions where the patient can go for the day, where they are cared for and given things to do to occupy them happily. This gives the carer time to recover and gather their thoughts, and take care of themselves.
Dementia is quite a sad situation, as loved ones feel they have "lost" their family member even though he is still with them. But there are lighter moments, and with the help of friends, family and support groups, the burden is a lot lighter. Life does go on!
Duncan Kelly

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A compelling video featuring caregivers of people living with dementia appealing to their fellow caregivers to seek support and take respite.
By Bob DeMarco
Alzheimer's Reading Room
Caregivers speak movingly based on their own experiences directly to others like them on the importance of finding information, obtaining home care and other types of in-house assistance, joining support groups, and accessing respite through day programs and overnight guest houses.

Caregivers appeal to their peers to obtain assistance, and not wait for a crisis to occur.

This is really an excellent video that is worth watching and sharing. If you take the time to let it get rolling you will start to recognize the value.

The clear message is that no caregiver to loved ones with dementia is a superman or superwoman.

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Produced by the Champlain Community Access Centre (www.champlain.ccac-ont.ca) the Alzheimer Society of Ottawa and Renfrew County (www.alzheimer.ca/ottawa) and the Champlain Dementia Network (www.champlaindementia.org). Directed by the Peabody Award-winning Director Firdaus Kharas of Chocolate Moose Media (www.chocmoose.com).

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The purpose of this article is to provide 25 tips to help you survive as an Alzheimer’s caregiver, and to help you avoid some of the negative health effects that are often associated with stressful caregiving.
By Marie Marley
Alzheimer's Reading Room
The Alzheimer’s Association estimates that there are more than 15 million people serving as caregivers to people with Alzheimer’s.

The Family Caregiver Alliance states that caregivers are at increased risk for declines in physical and mental health. Furthermore, the Alliance states that women experience worse health effects than men.

Finally, an article originally published in the American Journal of Nursing says that caring for someone with dementia causes worse health effects than caring for people with other diseases.

The purpose of this article is to provide 25 tips to help you survive as an Alzheimer’s caregiver and avoid some of these negative health effects.

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25 Tips for Surviving as an Alzheimer’s CaregiverLearn what community resources are available: Know where you can get help from the community.Become an educated caregiver: Some useful sites for educating yourself are the Alzheimer’s Association and the Alzheimer’s Reading Room. Also, attend any caregiving seminars presented in your community.Ask for help – and accept it: Don’t be too proud to ask for help. Getting help can make a major difference in your life.Take care of yourself: Try to eat well and exercise regularly.Manage your level of stress: Consider taking a stress management course.Accept changes as they occur: Go with the flow. Your loved one’s condition will change frequently.Give yourself credit – not guilt: Make a list of all the things you are doing correctly and look at it frequently.Make legal and financial plans before they are needed: Put your loved ones affairs in order now. Don’t wait until it’s too late.Visit your doctor regularly: Go to the doctor when you don’t feel well and be sure to have all of the recommended health screening tests done.Understand what’s happening as early as possible: Read up on Alzheimer’s disease so you understand what’s happening.Consult a geriatric care manager: Geriatric care managers are specialists who help families care for elderly relatives. They can provide valuable information and resources you will need to help you through these difficult times.Contact the Alzheimer’s Association for help: The Alzheimer’s Association (www.alz.org) has a 24/7 help line. Just call 1-800-272-3900.Contact the Alzheimer’s Foundation of America for help: This organization (www.alzfdn.org) has a help line operated between 9:00 AM and 5:00 PM Monday through Friday. Call 1-866-232-8484.Study and put into practice “The Caregiver’s Bill of Rights:” You can find this document here.See a psychotherapist: If your stress level is very high or if you are feeling depressed, a therapist might be able to help you.Consult with your spiritual leader: If you are a religious person your spiritual leader might also be able to help you.Join a support group: Support groups can be helpful for Alzheimer’s caregivers, even if you just listen in.See a family therapist if there is conflict in your family: If there is a lot of conflict among family members consider seeing a family therapist.Keep a journal: Writing about your experiences and feelings every day can also be therapeutic.Learn how to get along better with your loved one: Here are three quick tips: Don’t contradict or argue with them, Don’t bring up subjects that might upset them, and if they do get upset quickly change the subject. Following these tips will lead to a better relationship.Take up a hobby about which you become passionate. It’s important to have time to yourself. Find a hobby you love. It can make a big difference.Overcome Denial: Quit making excuses for your loved one’s memory and functioning problems. Admit to yourself that they have Alzheimer’s.Make peace with Alzheimer’s: After you admit to yourself the person has dementia it’s important to truly accept that fact. Learn to love the person just as he or she is.Make peace with God: If you are a religious person, make peace with God for allowing your loved one to have this disease. Pray and, again, consult your spiritual leader.Spend time with people you love: Being with people you love can help recharge your batteries and will improve your quality of life.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

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NOTE: Tips 1 – 10 are based on a list from the Alzheimer’s Association – 10 Ways to Become a Healthier Caregiver; tip 25 is from Caregiver.com.

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By Marie Marley
Alzheimer's Reading Room
Sometimes we suffer more than the person with Alzheimer’s. That’s because, in part, people with Alzheimer’s disease typically live mostly in the present.

They don’t live that way because of any particular wisdom, though. It’s because of the disease. They usually don’t fret over yesterday simply because they can’t remember it.

That’s one of the less dreadful things about this disease. People with dementia typically quickly forget unpleasant things that happen to them and upset them terribly. And they forget it quickly – sometimes by the next day if not in a matter of hours or minutes.

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Yet caregivers who experience a patient’s extreme distress over some issue or another tend to keep the patient’s suffering clearly in their minds, and they themselves can suffer greatly because of it.

Caregivers don’t easily and quickly forget painful things that happen to their loved one. They suffer because they think their loved one is still distressed, and they feel even more pain because there’s usually nothing they can do about it.

Caregivers can be deeply troubled about the patient’s reaction to hurtful things for days, weeks or even years later. Unless they observe their loved one very carefully they may not realize he or she has forgotten all about the incident and moved on to other things.

Here’s the critical question all Alzheimer’s caregivers should ask themselves when they are upset about something related to their loved one:

“Is the issue bothering my loved one?”
If not, that’s what’s important. We shouldn’t let it bother us either. We need to think about and accept their feelings more than we focus on our own.
Here are some examples that illustrate my point.

I have a friend who told me that one Christmas day she brought her mother, who was living in a nursing home, to her own home for the day, thinking this would be a special treat for her mother. Once at the house her mother became deeply distraught and kept asking to go home.

As my friend was telling me about this event it was clear that she was still upset about it. And the shocking thing was that this event that had occurred three years earlier.

I’d be willing to bet that her mother forgot all about it the next day if not the moment she arrived home. In other words the incident no longer mattered to her.

In addition to forgetting bad things that happen to them, people with dementia might adjust to change more easily than their loved ones do.

That’s because they may forget that any change has occurred. They don’t remember how things were before the change. Thus they’re not aware any change has taken place.

Another incident involving wanting to go home occurred when Ed was moved to another room in the nursing home where he was living. Like my friend’s mother he, too, wanted to go “home” – back to his old room.

When I arrived to visit him a few hours after the move took place I found him sitting on a little bench in the hallway outside his room. He kept saying over and over in a plaintive tone to voice, “I want to go home.”

He made this mournful request to every single person who passed by. And he repeated it to me several times. In fact, it’s the only thing he said to me that day. I was distressed because Ed was suffering.

My heart was broken as I drove home. Much to my surprise, however, when I arrived to visit the next day he had forgotten all about it. He was delighted to see me – as always – and he didn’t once ask to go home.

He was functioning as though he hadn’t been moved at all. Nonetheless that urgent plea reverberated in my mind and caused me great emotional pain for days afterward.

Again, I was the one who was suffering – not he. He was living only in the present and he obviously felt as he would have had he not been moved.

Another example is that my cousin was angry with her mother’s facility because they sometimes dressed her in sweats during the daytime. Her mother would never have previously done that.

But as it turned out once she was in a nursing home it didn’t bother her at all. To put it simply something the person may not have liked before getting Alzheimer’s may be quite okay with them after developing the disease.

We need to let it be okay with us, too.

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Mr. Williams was given a clinical diagnosis of PD and treated for motor symptoms. The report confirms he experienced depression, anxiety and paranoia, which may occur in either Parkinson's disease or dementia with Lewy bodies.
By Alzheimer's Reading Room
The recent release of the autopsy and coroner reports on Robin Williams has raised questions about his state of health at the time of his tragic suicide earlier this year.

Some news reports indicate that Mr. Williams had dementia at the time of his death.

The Lewy Body Dementia Association (LBDA) provides information about what can – and cannot – be concluded from these reports.

The autopsy indicated the presence of ‘diffuse Lewy body dementia’ in the brain of Mr. Williams. 

This is more commonly called ‘diffuse Lewy body disease’ which reflects the biological disease process in the brain.

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Did Robin Williams Have Dementia?Lewy Body Dementia Association clarifies information from autopsy

“The use of the term dementia in the neuropathology report should not be inferred to mean that dementia was observed during life,” warns Dennis Dickson, M.D., Mayo Clinic in Jacksonville, Fla. and member of the LBDA Scientific Advisory Council.

Lewy bodies are misfolded protein deposits found in the brains of individuals with several different disorders including Parkinson’s disease (PD) and dementia with Lewy bodies (DLB).

According to his wife, Robin Williams was battling “the early stages of Parkinson's disease” before his death. In early PD, Lewy bodies are generally limited in distribution, but in DLB, the Lewy bodies are spread widely throughout the brain, as was the case with Robin Williams.

Dr. Dickson, who has reviewed the autopsy and coroner’s report, further states,

“Mr. Williams was given a clinical diagnosis of PD and treated for motor symptoms. The report confirms he experienced depression, anxiety and paranoia, which may occur in either Parkinson's disease or dementia with Lewy bodies.”

Is it Dementia with Lewy Bodies or Parkinson’s Disease?
Both Parkinson’s disease with dementia and DLB are considered Lewy body dementias because of the presence of Lewy bodies in the brain. Collectively, Lewy body dementias are the second most common form of dementia and affect an estimated 1.4 million Americans.To receive a diagnosis of dementia with Lewy bodies, a person must have significant problems with thinking and memory that interfere with everyday life. There is no mention in the media or in the autopsy report that Robin Williams exhibited these symptoms.It is not uncommon, however, for early signs of dementia to go undetected. The Mini Mental Status Exam – a common screening test for cognitive impairment and dementia used by many physicians – is not able to detect cognitive impairment in early DLB.

“Further research is needed to better understand why some individuals with diffuse Lewy body disease do not show symptoms of dementia,” according to Dr. Dickson. “In particular, we need to learn how dementia with Lewy bodies differs clinically from Parkinson’s disease when they both share the same underlying disease process.”

DLB and PD share many symptoms, but have different patterns of onset, progression and symptom severity. The most prominent and problematic clinical symptoms in early PD are related to movement, while in DLB they are more likely to be cognitive and psychiatric.

However, over the course of both disorders, the symptoms become more and more alike. (See LBDA’s comparison chart for details.)

To learn more about Lewy body dementias, visit lbda.org.

About Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” .

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Lewy body dementia (LBD) is a progressive neurological disorder. Lewy body dementia is an umbrella term for two related diagnoses - Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB).

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The seamless process has been used before in investigations of potential treatments for cancer and heart disease, but the DIAN-TU trial is the first such trial for Alzheimer's disease.
By Alzheimer's Reading Room
The trial, led by Washington University School of Medicine in St. Louis, is known as the DIAN-TU trial, for the Dominantly Inherited Alzheimer's Network Trials Unit.

The National Institute on Aging of the NIH has awarded $5.5 million in funding to continue and expand the trial, which is focused on dominantly inherited forms of Alzheimer's disease.

In all, the National Institute on Aging will provide an estimated total of $26 million in funding over the next five years to support the groundbreaking trial.

"This approach, called seamless adaptive trial design, enables us to condense the stages of the trial so it finishes three years earlier than the decade it normally would take. Thanks to the support of this grant, the current DIAN-TU trial may lead to approved preventive treatments for dominantly inherited Alzheimer's disease." -- Randall Bateman

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New funding speeds identification of drugs to prevent Alzheimer's
The National Institutes of Health (NIH) has boosted funding for the first large-scale clinical trial aimed at identifying drugs to stop or slow Alzheimer's disease in people destined to get the debilitating illness.
The trial, led by Washington University School of Medicine in St. Louis, is known as the DIAN-TU trial, for the Dominantly Inherited Alzheimer's Network Trials Unit. The National Institute on Aging of the NIH has awarded $5.5 million in funding to continue and expand the trial, which is focused on dominantly inherited forms of Alzheimer's disease. In all, the National Institute on Aging will provide an estimated total of $26 million in funding over the next five years to support the groundbreaking trial.With the new funding, patients enrolled in the trial can remain on the drugs they receive in the trial's initial stage, known as the biomarker testing phase, as the trial shifts to the final stage, known as the cognitive endpoint phase. The study is currently in the initial biomarker phase, which looks for early indications that the medication is having the desired effects in trial participants; in the cognitive endpoint phase, researchers will evaluate the drug's long-term ability to prevent or delay disease.The last phase provides the critical data regulators such as the Food and Drug Administration consider when reviewing an investigational drug.

"This approach, called seamless adaptive trial design, enables us to condense the stages of the trial so it finishes three years earlier than the decade it normally would take," said principal investigator Randall Bateman, MD, of the School of Medicine. "Thanks to the support of this grant, the current DIAN-TU trial may lead to approved preventive treatments for dominantly inherited Alzheimer's disease."

The added support also will help the researchers enroll 300 to 400 additional participants in the trial and establish 10 to 15 additional sites for the study, which is treating volunteers in the United States, Canada, Australia and Europe. Search more than 4,900 original articles for 
Successful treatments for dominantly inherited Alzheimer's, a disease that typically strikes in a person's 30s, 40s, or 50s, one day may be used to slow or stop the much more common forms of Alzheimer's that occur later in life.

Nearly half of all late-onset Alzheimer's disease cases are linked to a particular form of one gene, Apoe4. But having one or two copies of this form doesn't guarantee a person will develop Alzheimer's.

In contrast, in dominantly inherited Alzheimer's, a single copy of one of the critical mutations, identifiable through genetic screening, means a person is almost certain to develop memory and other cognitive problems that may lead to Alzheimer's dementia.
Scientists have developed a detailed timeline of the brain changes Alzheimer's causes in the years before symptoms appear. The DIAN-TU trial is testing two treatments in patients with inherited Alzheimer's to see if the drugs can slow or stop the disease's progression and the onset of symptoms. DIAN-TU researchers continue to work with pharmaceutical companies to identify a third drug for testing in the trial.Bateman, the Charles F. and Joanne Knight Distinguished Professor in Neurology, compares conventional clinical trials to putting people on a train that appears to be headed toward a desirable destination: successful treatment of a disease. As the train moves down the track and patients are treated with the trial drug, scientists check to make sure the train is still headed in the right direction.Normally, the clinical trials process requires researchers to stop the train at some point, take all the passengers off and conduct a detailed assessment of their progress. (This is the end of what's known as a phase 2 clinical trial.)To complete the journey to a new, approved treatment, researchers have to assemble a second, larger train (a phase 3 clinical trial), board the passengers and start that train moving. Building and starting a new train take a great deal of time and money.

"This new grant lets us keep the train rolling as long as it still seems to be moving toward the goal," Bateman said. "As long as we have a treatment that appears to be safely doing what it's designed to do, we can continue to treat and monitor DIAN-TU trial participants."

Regulators gave the DIAN-TU researchers the leeway to test new drugs in this fashion based in part on the urgent need for treatments for inherited Alzheimer's.

The seamless process has been used before in investigations of potential treatments for cancer and heart disease, but the DIAN-TU trial is the first such trial for Alzheimer's disease.

As other Alzheimer's medications pass initial tests for safety and effectiveness, Bateman and his colleagues will consider evaluating them in the DIAN-TU trial. 

"By providing us with this grant, the National Institute on Aging has made it possible for us to safely accelerate the journey toward a new era of preventive treatment for inherited Alzheimer's disease," Bateman said. "We can't say now if any of these new drugs will be successful, but we're looking forward to working at a faster pace with pharmaceutical companies and regulatory agencies to find effective treatments."

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_____________________

Additional supporters of the trial have included the Alzheimer's Association, which provided a $4.2 million grant, and pharmaceutical companies, which gave financial support and donated treatments. Private companies also donated a brain plaque imaging agent and a computerized cognitive skills test.

This research is supported by the National Institute on Aging of the National Institutes of Health (NIH), grant numbers R01 AG046179 and U01 AG042791.

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Adaptive Interaction is based on an approach used by those coping with communicative impairment caused by a stroke, learning disability or severe autism, known as Intensive Interaction. This technique is based on developmental theory that traces how all human beings learn to talk by building on the non-verbal communicative abilities with which they were born.
By Bob DeMarco
Alzheimer's Reading Room
The Alzheimer's Reading has 100s of articles about the use of nonverbal communication, tactile communication, and how to communicate more effectively with a person living with dementia.

We often suggest that being a "guide" is more effective than being a "boss" or a parent. We always suggest starting with a smile; and then, waiting until you receive a smile in return.

We have article on how to use your hand, how to touch, how to attach your head, and long list of suggests on how to build a communication bridge to a person living with dementia.

You will need to think broadly, but I believe you will find the research summary below of great interest. Also, take a look at the linked articles at the bottom of this article.

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Communicating with individuals with advanced dementia in their own terms can have a profound effect on the lives of those living with the illness, according to a specialist in the subject.

Dr Maggie Ellis, of the University of St Andrews, says that working with an individual’s non-verbal ‘language’ can allow families to connect with loved ones in powerful new ways.

The researcher says the method is a simple but effective means that relatives and professional caregivers can use to retain or create an emotional bond with individuals with advanced dementia.

Alzheimer’s Scotland say the approach, which will be discussed at a special event in St Andrews tonight (Monday 10 November), ‘holds great promise’.

Dr Ellis, a dementia specialist, developed the method of ‘reaching’ individuals in advanced stages of dementia with fellow psychologist Professor Arlene Astell. The researchers found that people with advanced dementia respond more readily to reflections of their own communication behaviours than to speech.

Working closely with local nurses, individuals living with advanced dementia and their families, Dr Ellis and Professor Astell have witnessed first-hand the ‘transformative’ impact of the intervention they call ‘Adaptive Interaction’.

Dr Ellis says their discovery is an important insight as rates of dementia increase.

She said, “It really is a case of going back to basics. At first people find it strange or awkward to communicate with an adult using non-verbal communication such as hand movements or facial expressions. It requires time and effort, but the important thing is that it really does work.

“I've witnessed some really profound reactions to this type of communication. For some families, it’s the only way they have left to engage in meaningful interactions and retain a close connection to their loved one. They often describe the discovery that they are able to stay in contact as ‘an amazing feeling’.”

For professional caregivers, the approach provides them with the means to connect with individuals they care for in a way that may have been previously impossible.

The lecture is hosted by the organisation connected baby, recently founded by Dr Suzanne Zeedyk, an Honorary Fellow of the School of Psychology at the University of Dundee. Dr Zeedyk, who has trained 20,000 people in the science of connection in the last three years, said,

“It is fantastic that this lecture will allow us to highlight how non-verbal capacities remain central to our ability to thrive as human beings, from the moment of birth and throughout our lifespan. It is too seldom that our understanding of dementia is framed from a developmental perspective.”

The lecture, which 200 people have signed up to attend, will also serve as the launch of a new book co-authored by Drs Ellis and Zeedyk and published by connected baby. Entitled ‘Rethinking Communication: The connected baby guide to advanced dementia’, the book is aimed at family members and professional carers of people affected by advanced dementia.

Henry Simmons, Chief Executive of Alzheimer’s Scotland, will speak at the sold-out launch event in St Andrews. He said, “Adaptive Interaction holds great promise. Yet the connected developmental theory that explains its effectiveness is in danger of being misunderstood. This book does a superb job of showing us how we can overcome this and truly honour each person's humanity”.

The research has profound implications for the way individuals with advanced dementia are treated, not just by nursing staff, but their families who may feel their loved one is ‘gone’.

Those utilising the techniques developed by Dr Ellis and Professor Astell talk of seeing their loved ones ‘glow’ and laugh and engage in ways they hadn’t seen for a long time, and the comfort they feel from this connection. Tonight’s event will also feature those with real life experience who will speak about its effectiveness, and what they have learned about dementia through its use.

Dr Zeedyk added, “Cutting edge science is now showing us that many of the symptoms attributed to dementia can be traced back to emotional attachment patterns established in early in life. This link surprises people, but it makes perfect sense when you understand the science of connection.

“Those early experiences shape how the brain functions, and especially how it self-regulates stress. Dementia generates a great sense of stress. If we recognise that, then we can help carers to reduce that stress, rather than be confused by it.”

Adaptive Interaction is based on an approach used by those coping with communicative impairment caused by a stroke, learning disability or severe autism, known as Intensive Interaction. This technique is based on developmental theory that traces how all human beings learn to talk by building on the non-verbal communicative abilities with which they were born.

The research carried out was made possible thanks to the award of a £5000 Scottish Funding Council Innovation Voucher.

Ref: Tapping into dementia http://bit.ly/1xdyvp9

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"This study suggests a completely new way to look at Alzheimer's that might alter the way we study the disease, screen for it and ultimately treat it."
By Alzheimer's Reading Room




New research that dramatically alters the prevailing theory of how Alzheimer’s disease develops has been published online today by Georgetown researchers in the journal Molecular Neurodegeneration.

The research also helps explains why some people with plaque buildup in their brains don’t develop dementia, and shows the potential of a cancer drug to combat the disease.

“This study suggests a completely new way to look at Alzheimer's that might alter the way we study the disease, screen for it and ultimately treat it,” says the study’s senior investigator, Charbel E-H Moussa, MB, PhD, of Georgetown University Medical Center.

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NEURONAL DEATH

Moussa co-authored the study with researchers from Capital Medical University in Beijing, China and Merck Research Laboratories, which provided funding for the study.

The research team discovered that malfunctioning tau, not amyloid-beta plaque, is the seminal event that spurs neuron death in disorders such as Alzheimer’s disease.

Neuronal death occurs when tau, a protein found inside neurons, fails to function, the study shows.

GENES AND AGING

The role of tau is to provide a structure – somewhat like a train track – inside brain neurons that allows the cells to clear accumulation of unwanted and toxic proteins or “garbage.”

Malfunctioning tau can occur because of errant genes or through the normal aging process. As some individuals grow older, tau can malfunction, while enough normal tau remains to help clear the garbage.

“That explains the confusing clinical observations of older people who have plaque build-up, but no dementia,” Moussa explains.

COMMON CULPRIT

Moussa is an inventor on a Georgetown University patent application for use of nilotinib, a drug approved to treat cancer, as a therapeutic approach in neurodegenerative diseases.

The study shows that nilotinib can help the neuron clear the garbage if some functional tau remains.

“This drug can work if there is a higher percentage of good-to-bad tau in the cell,” Moussa says, adding that many dementias have malfunctioning tau and no plaque accumulation, such as a type linked to Parkinson’s disease. “The common culprit is tau, so a drug that helps tau do its job may help protect against progression of these diseases.”

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Over half of Alzheimer's caregivers reported significant financial stress, an unsurprising statistic given the combined challenge posed by massive care costs and the career-altering sacrifices that caregivers must make.
By Alzheimer's Reading Room
More than a quarter of Alzheimer's caregivers spend over $4,000 each month on their loved one's care, according to a new AgingCare.com survey of more than 1,600 people taking care of a family member with Alzheimer's or a related dementia.

Top costs include paying for services such as professional home care, adult day care, assisted living and nursing home care.

Highlights
25% of Alzheimer’s caregivers spend over $4,000/month on their loved one’s care.38% of Alzheimer’s caregivers provide more than 30 hours/week of unpaid care for a loved one.64% of Alzheimer’s caregivers are caring for a parent, while 18% are caring for a spouse.51% of people with Alzheimer’s are living at home and being cared for by a family member, a paid caregiver or both.Fewer than half of Alzheimer’s caregivers talked with their loved one about financial matters before their diagnosis.61% of Alzheimer’s caregivers say their loved one did not make any financial plans for their future care before their diagnosis.38% of Alzheimer’s caregivers use some of their own personal money to pay for their loved one’s care.

"Alzheimer's caregivers face some of the most astronomically devastating financial costs," says Joe Buckheit, president of AgingCare.com, an online resource that connects family caregivers.

To raise awareness of the impact of Alzheimer's disease on families during Alzheimer's Awareness Month and Family Caregiver Month, AgingCare.com's survey "The Financial Impact of Alzheimer's on Family Caregivers: 2014" 
highlights the unique financial challenges faced by the more than 15 million Americans taking care of a family member with Alzheimer's. Subscribe to the Alzheimer's Reading Room
Take a look at the report here: Over half of Alzheimer's caregivers reported significant financial stress, an unsurprising statistic given the combined challenge posed by massive care costs and the career-altering sacrifices that caregivers must make. Nearly 30% were forced to reduce their working hours as a result of their loved one's care needs, while 25% had to quit their job entirely.

"It was impossible for me to continue my job and care for my family's needs," says one caregiver. "Calls would come at any time of the day and night." Even those who don't have to quit may find their professional opportunities restricted.

And too many families don't discuss future care needs and financial concerns in advance.
Sixty-one percent of Alzheimer's caregivers say their loved one neglected to prepare for their care prior to being diagnosed, while fewer than half actually sat down with their family to talk through their financial concerns.Consequently, the most often mentioned piece of wisdom from long-time Alzheimer's caregivers: plan early and have the tough conversations.

"Every day, Alzheimer's caregivers—many of whom are balancing the needs of aging family members with those of their own children—are confronted by impossible choices," says Buckheit. "By talking to and connecting with other caregivers who've been in similar situations, these men and women can find practical and emotional support to make the best decisions for their families."

Findings include:
38% of Alzheimer's caregivers provide more than 30 hours/week of unpaid care.64% are caring for a parent, while 18% are caring for a spouse.51% of people with Alzheimer's are living at home and being cared for by a family member, a paid caregiver, or both.About AgingCare.com
AgingCare.com is the go-to destination for family caregivers, providing trusted information, practical answers to real-life questions, and ongoing support through every challenge.  Visit www.AgingCare.com to learn more.

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We are often constrained in our caregiving effort by our own inability to understand that Alzheimer's patients are capable of more than we can imagine.
By Bob DeMarco
Alzheimer's Reading Room
I'm sitting here thinking about my eight and a half years as an Alzheimer's caregiver. Together Dotty and I traveled an interesting path -
As I think of the first eighteen months I now realize how emotionally painful it was. How painful it can be.

There is no doubt that caring for anyone who is ill is burdensome. But caring for someone living with Alzheimer's or a related dementia can in some ways seem tortuous if you allow it to be so.

Typically, Alzheimer's patients decline slowly over a long period of time. This period of time typically lasts 7 to 8 years.

It took me a long time to realize this, even though I knew it. For the first couple of years when people would ask, how long do you think you will be doing this? I usually answered another year or two.

However, once I decided, became determined really, to keep Dotty at home to the very end if possible, my answer became very simple,

That is how I began to envision our life, one day at a time. Subscribe to the Alzheimer's Reading Room

I decided along the way that Dotty and I would begin living our lives. 
Living the way we did before a diagnosis of AD. Living our life just like we always did -- to the degree possible.

We did it. We did it for all but the last 20 days. Amazingly, we went out to eat and had a nice time 21 days before Dotty went to Heaven.

I can still envision Dotty chomping on her last cheese steak. It was really amazing watching Dotty eat. She often ate with real passion. When I would ask her while eating any of her favorite foods, how is it, she would respond delicious.

It wasn't always that way. During the period of greatest burden her answer to the same question was also always the same - okay.

I didn't like that answer. It made me feel sad.

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Many of you reading this article are new, so you probable didn't read my hundreds of stories about Dotty and me. Hundreds of happy tales.

I'm sitting here remembering when Dotty started singing a song I had never heard in my life - Ghost of a Chance. It happened while we were watching the HBO hit show TREME.

One of the main characters Antoine (Wendell Pierce) is walking down Bourbon street when he comes up on characters Sonny (keyboard) and Annie (violin).

Antoine starts singing the song. As he does this on TV, Dotty starts singing along with him. I was so stunned I kinda short circuited. I asked Dotty, do you know that song? She said yes. I asked, do you know the name and she said no.

I couldn't shake it off so the next day I put Dotty in front of the computer, played the song on YouTube, and sure enough Dotty started singing the song. I hit the stop button on YouTube and Dotty just kept on singing. Wow.

Persons living with dementia seem to like music. They can remember songs from the distance past. A Ghost of a Chance was written in 1932. It was first sung and made famous by Billie Holiday. Later it was modernized and re-recorded by Frank Sinatra. Dotty was born in 1916.

From that point on I started putting on the Swing music channel on our television every day. Dotty would start singing out of nowhere usually the more popular songs from her era. But sure enough, every once in a while she would start singing a song I never heard in my life.

It would be impossible for me to tell you how happy this made me feel. Joy. Real Joy.

Dementia patients also like pictures.

You might find this hard to believe but

the ability to remember pictures is actually greater in patients with Alzheimer’s disease than in healthy older adults.
This is the finding of Dr. Brandon Ally at Vanderbilt University. Dr. Ally is one of the few that is actually trying to discover strategies that can ease the burden on caregivers.

I once showed Dotty a picture of her granddaughter Katilyn. While discussing the picture I asked Dotty, do you remember where you went to first grade? Without hesitation she answered - Saint Monica's.

Dotty started first grade in 1922.
In order to move from burden to Joy you have to accept the things you cannot control.

Then, start looking for things that bring a smile to the face of a person living with dementia. You can start with music and pictures.

There is a lot more in there, in the brains of Alzheimer's patients than we can imagine.

We are often constrained in our caregiving effort by our own inability to understand that Alzheimer's patients are capable of more, much more, than we can imagine.
We often constrain ourselves by focusing on what isn't. Instead we should focus on what is, and what can be.

Alzheimer's patients can continue to live their lives. They just need a little help.

I guess you could say you have to figure out how to be part of the solution, instead of part of the problem.

One of the first steps in a solution is to

Do that and eventually you will come to the fork in the road. Take one big step to the left and get off the path of burden and on to the path of Joy. I learned that Joy is a cumulative emotion. A kind of intense happiness that builds on itself over time.
Amazingly these feeling of happiness rub off on us. And, it is the Alzheimer's patient that delivers these feelings of Joy if you allow them to do so.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob lives in Delray Beach, FL.

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It’s important that you know your loved one well enough to recognize when he or she may be getting overwhelmed. Always remember, too, that it’s not his or her fault: that’s just how dementia works sometimes.
By Rachael Wonderlin
Alzheimer's Reading Room

We’d had a great day at my memory care community. Forty children from a local elementary school came to visit for Halloween, and the kids sang for our residents. We gave candy to the kids, and the kids gave our residents hugs.

One of our residents, Mary*, gets agitated very easily. She does not interact much with other residents, and seems, generally, like she’s in her own world.

I looked over at her at one point, however, and saw tears of joy in her eyes. Child after child went up to hug her as she sat in her wheelchair. Mary’s smile stretched across her face as she threw her arms around each and every guest.

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Two hours later, after the children had gone, Mary was panicked. “Get OUT! Go away! Get out of here!” she screamed at the staff. 
“Let’s get her into a quiet space,” I told everyone.

We took her into a quieter room and I asked a CNA to stay with her. “Sit behind her so that she can’t see you,” I told her. “But we don’t want Mary to stand up and fall.”

Mary was experiencing sundowning, but it was made exponentially worse because of all of the stimulation she’d had earlier. Although she’d had a wonderful time with the children, it was probably an overwhelming experience. Now, at the end of the day, Mary was exhausted and anxious.

The holidays are coming up, and it’s important to make sure that your loved ones with dementia are there to enjoy the festivities. Bear in mind, however, that people with dementia can get more anxious and agitated than the rest of us, especially when there’s a lot of external stimulation.

If you’re bringing your loved one with dementia to a family party, be sure that they have time or space to “get away” from the crowd if they need to.

Recognize that you may need to adjust your schedule so that he or she can feel comfortable while you’re celebrating.

While everyone with dementia is different, many people in later stages of cognitive decline get agitated in the afternoon. When you or I could just say, “I’m feeling tired and I’d like to be left alone,” some people with dementia aren’t able to communicate that effectively. Instead, your loved one might begin to seem anxious or upset.

It’s important that you know your loved one well enough to recognize when he or she may be getting overwhelmed. Always remember, too, that it’s not his or her fault: that’s just how dementia works sometimes. Even if your loved one used to be very social and outgoing, he or she may have trouble socializing for more than a few hours.

With a couple adjustments and planning ahead, the holidays can be a wonderful time for your loved one with dementia to see family and friends.

Rachael Wonderlin has a Master’s of Science in Gerontology from the University of North Carolina at Greensboro. She works as a Memory Care Program Coordinator and Manager at Clare Bridge of Burlington in Burlington, NC.

Rachael also writes on her own blog at Dementia By Day.

*Names have been changed

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... And thus ended a beautiful thirty-year love story.
By Marie Marley
Alzheimer's Reading Room One day when I arrived at the Alois Alzheimer Center to visit Ed, my beloved Romanian soul mate of 30 years, he was in bed asleep.

He was often asleep when I arrived, but I was usually able to wake him and get him out of bed for a lively visit.

So I called out his name.

He opened his eyes and looked over at the housekeeper, Mary, who was mopping the floor.

“Isn't she beautiful?” he said - referring to me.

I was touched that even in his mentally-impaired state he could still make such spontaneous loving comments.

Mary nodded in agreement then left, silently closing the door behind her.

I smiled, walked over to Ed’s bed and handed him the large white teddy bear with curly fur I’d gotten for him at Walgreen’s the day before.

Never tiring of receiving new stuffed animals, he took the bear in his arms, hugged it, caressed it, and kissed it several times.

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“Do you like it?” I asked.

“Like it? I’m overcome with affection for him.”

Seeing how much he loved all the stuffed animals I took him brought me joy.

“Do you want to get up?” I asked.

“Sleepy!” he called out loudly in a child-like voice.

That was a first. So I sat down on the bed and held his hand. He dozed intermittently, looking so tiny and frail in his little bed.

His breathing was strange. I’d never seen him breathe like that. He took several short breaths then he stopped breathing completely for several seconds. Each time he stopped breathing, I watched his chest intently, waiting to make sure it started moving again.

This is how it will end someday. He will be dozing like this and breathing like this and stopping to breathe like this and simply not take another breath.

We talked in between his intermittent dozing. Nothing important. We talked about whether he had breakfast that day (he said he didn’t) and he told me again how beautiful I was. He also told me how wonderful it was that we were living in R-r-romania and that the facility where he was ‘leev-ing’ was fr-r-ree.

“I have to go home now,” I said after a while. I let go of his hand reluctantly and got up to put on my coat.

“When are you coming back?”

“Tomorrow,” I answered, getting my gloves from my purse.

Every time I visited – and I visited frequently - I always said I was coming back ‘tomorrow.’ It made him happy and I knew he’d never know the difference.

But instead of saying, “Wonderful! Marvelous!” as always, he suddenly looked hurt and disappointed, as though I’d said I wawasn'toming back for a month.

“Tomorrow?” he asked. “What do you have to do that’s so important you can’t come back until tomorrow?”

I didn't know what to say.

“Well, when do you want me to come back?” I finally asked.

“Today!”

“Okay,” I said, playing along. “I’ll come back today.”

“Early today!” he added firmly.

“Yes,” I said. “I’ll come back early today!”

“Marvelous!” he said. “Wonderful!” he added.

He smiled, obviously convinced by my statement. His eyes twinkled as he kissed my hand, and when I left I turned and blew kisses to him and he blew kisses back to me.

As I left the building, I contemplated the fact that Gerald Ford had died just two days earlier at age 93. Reagan, another of Ed’s heroes, had also died at age 93.

Ed was 93.

I have to admit I was a little superstitious.

I didn't go back to visit Ed again that day, of course. I’d said it just to please him as I’d always done.

I woke up at 6:00 the next morning, later than usual. I opened my journal file and started typing, keys softly clacking away in the otherwise silent house. I wrote about how worrisome Ed’s breathing was and I noted how odd it was that he had insisted I come back “early today.”

I paused to get my second cup of coffee. How much time did he have left? A year? More? Less? Who knew? I knew it was hard to predict with Alzheimer’s. I finished my journal entry after revising it several times, true to my obsessive-compulsive nature, then clicked ‘Save.’ Another day’s entry was complete.

Just then the jingling of my little Sanyo startled me. I walked over and picked it up from the file cabinet. Caller ID said it was the Alois Center.

Jeez. Why are they calling me so early on a Sunday morning?

I flipped open the phone.

“Hello,” I said.

“Hello. Is this Marie Marley?” asked a woman whose voice I didn’t recognize.

“Yes, it is,” I answered.

“This is Joyce, from the Alois Center. I’m afraid I have bad news for you.”

Oh my God! Ed’s fallen and broken a hip.

“Edward is gone,” she said simply.

And thus ended a beautiful thirty-year love story.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website contains a wealth of information for Alzheimer’s caregivers.

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About half of patients (50 percent) with an Alzheimer's diagnosis also have brain damage resulting from insufficient blood flow, indicating that the blood vessel alterations that contribute to stroke also could accelerate Alzheimer's decline.
By Alzheimer's Reading Room
For many years, scientists have known that degeneration of neurons — nerve cells that transmit signals to and from the brain — caused Alzheimer's dementia, an incurable disease afflicting more than 35 million people worldwide and approaching epidemic proportions.

Now, a new study from Weill Cornell Medical College reveals that changes occurring in blood vessels also play a major role —

by limiting the supply of oxygen and glucose to the brain and contributing to the neuronal damage causing Alzheimer's.
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Amyloid-beta — a protein fragment that accumulates in the brains of Alzheimer's patients — alters the normal function of neurons and sets the stage for dementia to develop.

At the same time, it also acts directly on endothelial cells, the cells lining blood vessels that control the delivery of oxygen and glucose to the brain, thereby damaging their DNA, or genetic makeup, according to the study published in Nature Communications.

Certain repair processes are put in place to override the damage, including activation of the DNA repair enzyme poly(ADP)-ribose polymerase, which ends up producing large amounts of the chemical ADP-ribose. ADP-ribose, in turn, activates a cellular surface channel — known as transient receptor potential melastatin-2 (TRPM2) — unleashing a flood of calcium ions into the endothelial cells.

This sudden and massive calcium overload cripples the endothelial cells and disrupts the supply of blood to the brain, resulting in insufficient delivery of vital oxygen and glucose to the working brain cells.

"The brain blood vessels become unable to supply the oxygen and nutrients needed to fuel the most energy-demanding brain functions, such as learning and memory," says the senior author of the study, Dr. Costantino Iadecola, director of the Feil Family Brain and Mind Research Institute and the Anne Parrish Titzell Professor of Neurology.

The research, conducted in mice, identified a mechanism by which this amyloid-beta peptide impedes the regulation of blood flow to the brain.

It also highlighted TRPM2 channels as a potential therapeutic target to counteract cerebrovascular dysfunction in Alzheimer's dementia and related conditions. Drugs are being developed that act on this channel to rescue the dysfunction of endothelial cells, enhance blood-flow delivery to the energy-deprived brain and delay disease progression.

Controlling hypertension, diabetes and obesity — so-called vascular risk factors — also may retard the progression and reduce the risk of Alzheimer's dementia, Dr. Iadecola says.

Studies in which patients have been carefully monitored for decades have revealed that people who have these vascular risk factors in their 50s and 60s have an increased risk of developing Alzheimer's later in life.
About half of patients with an Alzheimer's diagnosis also have brain damage resulting from insufficient blood flow, indicating that the blood vessel alterations that contribute to stroke also could accelerate Alzheimer's decline, Dr. Iadecola says. Autopsy studies have confirmed that stroke and Alzheimer's pathologies often coexist in the same brain.

"No one knows why exactly. But most likely, as you get older, especially if vascular risk factors are present, you also tend to have more damage to your blood vessels, which favors accumulation of amyloid beta in the brain. In turn, amyloid beta causes even more damage to blood vessels and further reduces their ability to nourish the brain. It's a vicious cycle that eventually harms brain centers involved in learning and memory and leads to dementia; drugs inhibiting TRPM2 may break this cycle and help reduce the amyloid burden in the brain."

The paper was first authored jointly by Drs. Laibaik Park, assistant professor, and Gang Wang, associate research professor, both in the Feil Family Brain and Mind Research Institute.

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Convincing a person living with dementia that can no longer drive might be one of the most difficult tasks you ever face as a caregiver.
By Nancy Wurtzel
Alzheimer's Reading Room
Imagine how you would feel if you could no longer drive. The ability to get in your vehicle and go where you want, when you want is no longer available. Your freedom, autonomy and mobility are gone, and suddenly you must count on others for all your transportation needs.

As an Alzheimer's caregiver, I went through the driving dilemma with both of my parents.

When my dad was in the mild stage of Alzheimer's, he realized he could no longer safely drive. In fact, driving seemed to overwhelm and even frighten him. As a result, Dad self-regulated and made his own decision to turn over all driving duties to my mother.

Dad was the exception. Caregivers report that those with memory loss rarely relinquish their right and ability to drive without resistance.

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My two sisters and I experienced this a decade later, when it became apparent that our mom was now having cognitive issues. Not able to see the impairment in her abilities, Mom initially balked at the idea of selling her car. However, we all noted her driving abilities had deteriorated significantly. It took some convincing on our part and a conversation with her doctor, but she reluctantly relented.

Caregivers often rank the issue of driving as one of the most difficult hurdles. Complicating matters, there are no universal standards or set guidelines to follow.

To assess their loved one's driving ability, caregivers can look for these typical red flags:
Forgetting how to locate a familiar placeHaving frequent near missesFailing to observe the rules of the roadDriving at an inappropriate speed, often very slowExperiencing delayed reactionsHesitation when making driving decisionsConfusing the brake and gas pedalsMaking frequent errors at intersectionsIf a caregiver notes several of these warning signs, it is probably time for the person with memory loss to dramatically curtail or stop driving altogether. Safety for your loved one and for others must be the paramount concern.

What's the best way to approach the topic?

Start by having a brief conversation in which you share concerns, cite examples and appeal to the person’s sense of responsibility. The next day, follow up with another short conversation and keep bringing up the issue. Always make the talks brief.

Eventually, begin talking about transportation alternatives as though driving was a thing of the past.
Speak with compassion, not blame. In return, listen and show empathy. Take the time to acknowledge feelings and resistance. Keep your cool by being patient but firm.

This all sounds good on paper but taking away driving privileges can be bring out all sorts of strong feelings.

Due to the disease, and especially if the person’s memory loss has progressed beyond the mild stage, there can often be anger, lashing out and even a refusal to discuss the subject. Remember, this is not the person’s fault. Cognitive loss can make it nearly impossible for a person to understand why operating a vehicle is no longer safe.
If there continues to be heavy resistance, seek professional intervention.The family physician can tell the person he or she must “retire” from driving. Some doctors will even issue a “No Driving” prescription. Other caregivers have asked their family attorney or insurance agent to reinforce the message.This decree from an expert often helps convince the person that the time to stop driving is now. Additionally, it takes the driving issue out of the caregiver's hands, so the "bad guy" is the authority figure and not the caregiver.However, when talking, reasoning and outside intervention is getting nowhere, the caregiver may need to take away the car keys, disable or even remove the automobile.Never underestimate the person’s desire to drive and never assume the driving is resolved until you have completely eliminated the person’s ability to do so. It is not uncommon for a person to stop for a period, but then begin using their car again without their caregiver’s knowledge.

While all of this is going on, the caregiver must put transportation alternatives in place.

Determine who will be taking the person to appointments and to run errands. Make a schedule and include time for some side trips or fun outings. Consider taxi or senior transport services. Ask other family members, friends and volunteers to give you a hand.

Consider all of the driving trips you will have to make. Many trips may not even be necessary. For instance, delivery services for prescriptions and groceries are available and many home items can be ordered online with free delivery.

As caregiver, never complain about driving the person. These comments will only serve to open a wound that is just beginning to heel. Be supportive and show through action that life can still go on after the car keys have gone away.

The driving conversation certainly ranks as one of the most stressful. Caregivers often feel isolated and alone when they encounter these major hurdles.

If you need additional help, contact the Alzheimer’s Association 24/7 Helpline at 800-222-3900 or visit the Dementia & Driving Resource Center on their website.

Nancy Wurtzel writes Dating Dementia -- a slightly twisted and humorous blog -- about making big changes at midlife. Read about Nancy's journey through divorce, restarting a career, empty nest challenges, moving home, baby boomer issues and caring for an aging parent with Alzheimer’s disease. Visit Dating Dementia.

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Driving evaluation

At the earliest stages, a person with Alzheimer's disease may begin to have difficulty with complex tasks such as driving. Although family and caregivers can watch for signs of unsafe driving, a proactive strategy would be to get a comprehensive driving evaluation by an occupational therapy driving rehabilitation specialist. The evaluation provides a more objective understanding of the current impact of the disease on driving capacity and results in a plan of options. The goal is always to retain the highest level of independence and mobility in the community. Initial recommendations may include strategies to reduce driving risk during the early part of the disease. The occupational therapist can offer strategies specific to the individual's goals and needs. The American Occupational Therapy Association website includes a national database of driving specialists as well as a wealth of resources for both persons with Alzheimer's disease and their families.

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Can a simple toy improve the behavior, mood, and level of awareness in a person living with Alzheimer's or a related dementia?
Bob DeMarco
Alzheimer's Reading Room
This article is about Alzheimer's disease, Pete the Repeat Parrot, and my mother Dotty who lived with Alzheimer's disease.

I wrote the original version of this article with some feelings of trepidation. On one hand, I didn't want to raise the spirits of Alzheimer's caregivers unduly. On the other hand, I believe I stumbled on to something that could prove to be an important Alzheimer's caregiving tool.

I'll start by mentioning, I tried to determine if their was any other variable that could be causing the behavior and mood improvement in my mother. As far as I could tell, the only thing that changed was the purposeful introduction of  Pete the Repeat Parrot into our lives.

For those of you that know me from this blog, you know that I was always trying to do things that improved my mother's behavior and interaction with others and me.

For the most part, everything I tried came from simple observations, or from something that I read and then reconnoitered to make it work in an Alzheimer's filled environment.

In the case of Pete the Parrot is was part design but mostly luck.

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My mother loved greeting cards that sang and/or shook. We had them all over the place. She picked them up at random and they fascinated her every time. 
I particularly liked the way she looked at them, she seemed to be trying to understand -- how does it do it?

My mother also loved singing, dancing, stuffed animals. They delighted her.

When she was delighted so was I. I bet you understand.
Before Christmas for some reason I can't explain, I decided to break out our Pete the Parrot (after 4 years). I couldn't find the parrot. So I ordered a new one from Amazon. By the time the parrot arrived Dotty was sick.

Finally after 5-6 weeks Dotty was getting better. I put the new Pete on the kitchen table and turned him on whenever Dotty sat down.

Not only did she talk to the parrot, she also sang to the parrot. She also started to tell the parrot how she was feeling. Like when she had a headache. These conversations started to become more meaningful. Like when she told the parrot she was bored and wanted to go out.

It was clear to me that Dotty seemed happier. More alive.
I was constantly on the search for "more there."

And then it happened.

I left the parrot on by accident. Dotty managed to wag her way up to the kitchen table and started talking to the parrot. I started listening from afar. 20 minutes, 30 minutes, then I ran up and made a podcast. Dotty didn't stop. 45 minutes, an hour. I was shocked.

Dotty was clearly more alive. Her voice was stronger. She was laughing on and off. She was clearly happier, more engaging and more aware. 
I am not saying that Dotty was the same as she was ten years ago, well before her diagnosis. I am saying that she was as engaged as I had seen her in years. More so, to be honest.

I made a simple decision. I decided to leave the parrot on at all times. Dotty spent hours talking to the parrot.

Then things I couldn't believe started to happen. Dotty started doing things she hadn't done in years.

She started waking up early in the morning (every day). Opening up the front door and bringing in the newspaper (as early as 6:30 AM). Not such a big deal until she did this -- she started turning on the light to read. This really blew me away. Dotty often reads in the almost dark, and usually turns lights off, rarely on. And, never on to read.

There are a long list of things that changed. Things she had not done in years to many years.
She took the trash out of the basket and tied the top of the trash bag.She used the microwave oven.She started making her own breakfast, two to three time a day (cereal).She started singing, every day.She started commenting on the what was happening on the television.She took out the insert in her panties, and once actually got the new one in (pee pee pad).She opened a tin of anchovies all by herself, not a simple task.I put a new jar of olives out where she could see them to see what would happen, she opened the jar (not an easy task) and ate the olives.Not only did she stack up the dishes when they were clean, something she had been doing for years, she put them away in the cabinet, something she has not done in years. Frankly, my eyes almost popped out of my head.There are changes in Dotty's mood and behavior.
She started initiating conversation. She woke up smiling and laughing in the morning. She was more alert in the morning for sure.And, she was eager to talk to Harvey.She was in a better mood most of the time, not all the time as I am sure you understand.

Her behavior improved in a simple sense -- she showed signs of behavior instead of dullness.

She was spending less time napping. 
Why? Because she was talking to the parrot instead of laying around. She was spending less time "vegging out".

We didn't  have a problem with sleeping. However, this parrot might help you with that problem.

At least 500 readers of the Alzheimer's Reading Room  bought a parrot after reading about Harvey.

Once you get the parrot and start using this tool we would like you to tell us about your own experience.

Please read this article also -

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Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.

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“The more we learned about Alzheimer’s, the more we wanted to shine a light on it and the more we became aware of the potential of this movie to be a catalyst for change.” -- Kim Campbell
By Bob DeMarco
Alzheimer's Reading Room

I just finished reading an excellent article in the New York Times about Glen Campbell. The article is about Glen and the movie, I'll Be Me.

Dr. Ronald C. Petersen of the Mayo Clinic, who diagnosed Mr. Campbell’s disease and is also chairman of a national Alzheimer’s advisory council says in the article,

“One of our biggest struggles is still getting people to acknowledge this disease,” he added. “So we need to embrace this and say he didn’t do anything wrong in his life to bring this on, that this can happen to virtually anyone.”

The author notes that the film is starting to get some Oscar's buzz.

Take a look at the movie trailor below and visit the New York Times to read thein depth article

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“Glen Campbell: I’ll Be Me” opens Oct. 24, and is a behind-the-scenes record of both his final tour and of the difficult struggles Mr. Campbell and his family face while they battle against Alzheimer's disease.

Read about Glen Campbell and the movie in the New York Times -

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Answers to Your Questions About Alzheimer's and DementiaThe Alzheimer's Reading Room Knowledge Base contains more than 4,901 articles. We have the answers and solutions to the most difficult problems that are encountered in  Alzheimer's and dementia care. 
The goal of the Alzheimer's Reading Room is to Educate, Empower, and sometimes Entertain Alzheimer's caregivers, their families, and the entire Alzheimer's community.

At its core the Alzheimer's Reading Room is about helping members of theAlzheimer's and Dementia Community understand, cope, and communicate with persons living with Alzheimer's and Dementia.

The Alzheimer's Reading Room is currently the number one source of information for Alzheimer's, dementia, memory loss, and related health and life news on the Internet.

Our search box is available on the right hand side of every page of this website. It looks like this.

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Alzheimer's disease knows no boundaries. It doesn't matter how rich or poor, how smart, or how highly educated. No one is immune. I wonder how long it is going to take before people finally realize - someone they know and  love could be next.
By Bob DeMarco
Alzheimer's Reading Room
Tom Magliozzi, popular co-host of NPR's 'Car Talk,' died from complications of Alzheimer's disease on Monday.

People loved this guy (and his brother). It was easy to imagine that you knew them - personally - after listening to them on the radio.

If you ever listened to Tom Magliozzi and his brother Ray on NPRs "Care Talk" you had a good time. These two brothers were so full of life.

Imagine listening to the show and learning so much about your car and how it works, and at the same time having such a good time.

"I'd just hear this laughter," said Doug Berman. "And then there'd be more of it, and people would sort of gather around him. He was just kind of a magnet."

“We can do a show about cars because everybody has cars,” Tom Magliozzi explained, “We couldn't do a show called Brain Talk.

Think about the above. Very funny.

Andrea Mitchell wrote on Twitter, "Tom Magliozzi made me laugh even tho I know nothing about cars! RIP."

I think that summed it up quite nicely. Subscribe to the Alzheimer's Reading Room
Learn more about this lovable character.

Or, go here to read more about Tom on NPR -

There are 901 comments under this story at NPR. People really loved this guy.

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Keeping loved ones with Alzheimer’s or dementia happy, involved, and in touch with family and friends during Thanksgiving and the  holidays is important and often difficult.
By Bob DeMarco
Alzheimer's Reading Room
I know many of you are worried. Keeping everyone happy without adding stress and tension can be a daunting task during Thanksgiving and the Holiday season.

This is the time of the year when you might have to take your loved one living with dementia on the road to a Thanksgiving, Christmas or Holiday dinner (or extended stay trip). Or maybe, you are having a large gathering at home.

You might be thinking, "Yikes".
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Chill out. You can do it.

My own words of wisdom -

Guide your loved one gently along the way.

Remember to go heavy on the positive reinforcement, smiles, hugs, touching, and especially the head hug.

Head hug? Arm around shoulders, two heads attached - touching. This is your number one tool of reassurance.

By the way, it won't hurt, and will help, if you get in the habit of using the "head hug" each and ever day.

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I ran across a list of 50 tips, and helpful hints that I think could be very beneficial to you and your family.

Click on the image below to get to the large printable version.

Source and Thank you: Brookdale (Senior Living Solutions) Related articles on Alzheimer's and Dementia Care

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Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.

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Many of the things that persons living with Alzheimer's do, and say, often seem odd to us. Why do we allow them to annoy us?
By Bob DeMarco
+Alzheimer's Reading Room

Our long time reader Jocelyn once asked,

"Why is it that it is usually the little things that are so annoying?

With Christmas on the horizon and during this time of year I thought it might be useful to give this issue some thought. Subscribe to the Alzheimer's Reading Room
Many of the things that persons living with Alzheimers do, and say, often seem odd to us. There is no doubt that dementia patients often see things differently in Alzheimer's World.

Why are the behaviors so disconcerting and unsettling to us?

Why do we let behaviors that we should have come to expect bother us? Over time we should learn that we are going to see and hear these behaviors over and over.

Wouldn't it be easier if we looked at the world from the viewpoint of the person living with dementia and accepted them as normal?

They are, of course, normal in a world filled with Alzheimer's - in Alzheimer's World.

It might be useful to ask yourself, "Why am I allowing the little things to bother me." Annoy me.

I learned while caring for Dotty that once I began to accept and understand that these new, unexpected behaviors were normal for a person living with Alzheimer's I was able to make it to the new world, Alzheimer's World.

Reader Bswahlen wrote,

My husband and I have started saying "What harm will it do" when his mom's behavior drives us crazy. This reminds us that if the activity will not cause her or anyone else harm and she is happy, then we leave it alone and don't worry.

Reader Edward W. "Ted" Gilliland wrote,

There are really a lot of things in life that do not really matter. It struck me as a therapist that it is not only true in Alzheimer's World, but also true of many of our healthy family and friends. As I write this, Lola sits across the room and babbles and sometimes screams. The sound is annoying and constant, but it is only important that I get a break. It isn't harming anything. I comfort her from time to time. It seems to be getting more constant. This too will probably pass.

Reader HarrietSW wrote,

If it isn't harmful or dangerous, don't sweat it! And think of your own growth....learning to accept "quirks" as the right of others to do/think independently. Betcha didn't think that quirks and wacky would be so much a part of your world now.

Reader Jocelyn also wrote,

Why is it that it is usually the little things that are so annoying. I used to get so annoyed with Paul as he would sit down at the table before I had a chance to push his chair in close, I kept trying to get him to wait until I said it is okay to sit down then one day it came to me to pull the table closer to him once he is sitting down (we only have a small table), works fine, he is happy & I am no longer stressing about such a little thing.

As it turned out that was an AHA moment for many of us. Such a simple solution to an annoying problem. Bunkhouse logic at its best.

Reader Trish wrote,

'Dad' 'mutilates, folds and spindles' the photos that he is given...They go in his pocket. Finally said that's OK and we photocopy pictures...he doesn't need the glossy prints. The 'bird' flash cards are also bent and stuffed in his pockets... 6 months ago I would have patiently explained how to use them, now I just smile. He loves to shuffle, fold, tear the things he likes...

So simple, so caring.

Here is a reminder from Dotty that I hope you will put to good use during this holiday season. This is a rewind.

Dotty's Ten Tips for Communicating with a Person Living with DementiaYou know what makes me feel safe, secure, and happy? A smile.Did you ever conside this? When you get tense and uptight it makes me feel tense and uptight.Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.Please try to understand and remember it is my short term memory, my right now memory, that is gone -- don't talk so fast, or use so many words.You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of castor oil. So I'll just say No to be safe.Slow down. And don't sneak up on me and start talking. Did I tell you I like smiles?Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don't have my attention, or confuse me? I am going to say No - count on it.My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don't come back and tell me you are sorry, I won't know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.You talk too much -- instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.The ordinary acts we practice every day at home are of more importance to the soul than their simplicity might suggest. 
~ Thomas Moore, Care of the Soul
God bless you all.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,960 articles. Bob lives in Delray Beach, FL.

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Some people might think or believe that Alzheimer's causes brain death. In other words, it causes the complete brain to stop functioning. This is not true.
By Bob DeMarco
Alzheimer's Reading Room
Earlier this week Tom Magliozzi, one of NPRs most popular personalities, died from complications of Alzheimer's disease. He was 77 years old.

This lead many people to wonder - Did Alzheimer's kill him or was it something else?

The simple answer, Alzheimer's does not kill a person directly.

Some people might think or believer that Alzheimer's causes brain death. In other words, it causes the complete brain to stop functioning. This is not true. With Alzheimer's the entire brain does not stop functioning all of a sudden (or it is very rare).

What happens as Alzheimer's progresses into the later stages is that certain bodily functions become more difficult.

For example,
some persons have trouble swallowing,others lose the ability to walk,some can no longer go to the bathroom,patients become much more vulnerable to infections,and patients often lose the ability to communicate which complicates all the issues above health issues.These are the most common complications that come with Alzheimer's disease. Subscribe to the Alzheimer's Reading Room
1. When a person can no longer swallow easily they might inadvertently inhale their food, and this can result in aspiration pneumonia.

Pneumonia is a breathing condition in which there is swelling or an infection of the lungs or large airways. Aspiration pneumonia occurs when food, saliva, liquids, or vomit is breathed into the lungs or airways leading to the lungs.

One of the most frequent complications and causes of death from Alzheimer's disease is aspiration pneumonia.

As far as I can tell for the majority of Alzheimer's patients the cause of death is listed as pneumonia. However, this is changing very fast and Alzheimer's rather than pneumonia is being recognized on death certificates.

2. When a person is no longer able to walk they often become bedridden.

This can result in bedsores.

Bedsores can develop quickly and are often difficult to treat. Bedsores can develop into a sepsis infection. Sepsis occurs when bacteria enter the bloodstream through broken skin and spread throughout the body. It's a rapidly progressing, life-threatening condition that can cause organ failure.

So bedsores are another complication of Alzheimer's that can lead to death by infection.

3. Most Alzheimer's patients are unable to communicate about health problems.

For example, it is not unusual for Alzheimer's patients to suffer from multiple urinary tract infections (also known as bladder infections).

Unlike you and me, they can't tell us they have a UTI.

The ordinary symptoms that we, the caregivers, expect are not always apparent in the elderly and persons living with Alzheimer's.

As a result, sometimes the symptoms while going undetected escalate into sepsis  infection. This is actually the first symptom that is noticed or detected.

Undiagnosed urinary tract infections resulting in a sepsis infection are a known complication of Alzheimer's disease and are a leading cause of death in Alzheimer's patients.

There are additional known complication. like blood clots, etc.

New evidence suggests that deaths from Alzheimer's are 5 to 6 times higher than previously reported by the Centers for Disease Control and death certificates.

If this is correct than Alzheimer's would be the third leading cause of death.
The bottom line here is that it is the complications caused by Alzheimer's disease that actually end up taking a persons life.

Your comments and reactions are welcome below.

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