We would laugh at some of the things he did and make jokes about him being forgetful.

Somehow things were always okay in those early days.  He knew me.  He would call me by name and always looked at me in his special way.  I was his little girl.

As his Alzheimer’s progressed, I could see the distance between us growing.

The laughing stopped.  The jokes stopped.  I was familiar to him but when he looked at me I could see him trying to remember who I was.  I wasn’t his little girl anymore.  I was “that lady” who lived upstairs.  “You know the one …” he would say.  “… the one that makes supper and takes us out for a donut sometimes.”

I would tell him my name, and remind him I was his daughter.  He would laugh and smile in his own special way.  He humoured me but I could tell he really wasn’t sure of anything.

He didn’t see me as his daughter because in his mind, he had no daughter.

Alzheimer’s had stolen my father, taken away his laughter, the special way he looked at me and turned his little girl into “that lady”.

There’s not a day that goes by I don’t miss his smile or the way he used to look at me.  There’s not a day that goes by that I don’t miss my dad.

Sure, the person I visit each day looks like and sounds like dad but I know it’s only a shell.  Alzheimer’s has destroyed his being and left him alone.  He’s in a dark place and I’m powerless to help him, to be that little girl for him, to offer him comfort and to bring back his laughter and his smile.

On certain days dad looks alive.  He walks and sings, oblivious to the dark place his disease has brought him.

It’s these days I look forward to.  Those are the good days.  Dad almost remembers me.  I close my eyes and listen to his happy tunes, his whistling and the happiness in his voice.

Those are my good days as well and if I look hard enough, I can catch a glimpse of him staring at me and in his eyes I know he sees his little girl.

Hoarding is not unusual for people suffering with Alzheimer’s or dementia.  It is a behaviour that will be exhibited throughout the progression of the disease and occurs for a number of observed reasons.

People suffering from Alzheimer’s have delusions and are often confused.  One of the most common fears expressed by those in early stage Alzheimer’s is the fear of being robbed.

Hoarding in this case is not as some expect an obsessive-compulsive behaviour but one that is rooted in a common delusion shown by almost all Alzheimer’s patients.  They hide things rather than hoard them to protect them from being taken.

As a caregiver you should know where to look when things go missing.  Check under the bed, pillows and bedclothes.  You may also want to check any closets, drawers or boxes that are in areas the Alzheimer’s patient may think are “safe” hiding places.  Other places such as purses, bags and hampers are also great places to “hoard” things and protect them from being stolen.  It is even likely items will end up under the mattress, in sugar bowls, coffee cans or in shoes.

Understanding this “hoarding” behaviour stems from a real fear that Alzheimer’s patients exhibit is the first step.  Locating all the common hiding places is the second and will make your life easier as a caregiver.

When a loved one becomes confused or unable to find something, you can assist by pointing out places they can look.

This hoarding behaviour also stems from the regression memory.  Alzheimer’s patients may associate something with a safe time in their younger life.  Given many people with this disease tend to recall early memories they associate safety with a particular item they have a happy memory about.

It will then not be uncommon to see people suffering from Alzheimer’s collecting one type of food item or having a favourite toy.  Being in possession of these familiar and safe items make them feel safe.  Once they hide or place the item somewhere they are unable to locate it again simply because Alzheimer’s affects short term memory so they must acquire the item again to restore the feeling of safety.

To help you as a caregiver cope with this hoarding behaviour you will have to take measures to keep the environment occupied by the Alzheimer’s patient simple and orderly.  Remove unnecessary clutter and identify items that bestows safe feelings for your patient.

Replace items that commonly go missing with ones made of bright colours.  This will allow you to easily locate hiding places and make the items easier to locate should they go missing.

However you should be careful not to remove items that can add to the agitation of the Alzheimer’s patient.  What may appear as something insignificant for you as a caregiver can cause a major incident when initially discovered by the patient.

Once you have made the decision to remove certain items remove them from their residence immediately.  This will prevent them from discovering these items later as they rummage searching for something “safe” and will also help minimize the overall hoarding that occurs.

Should an episode result from removing certain items, be there to support the patient and help them locate another “safe” item.

Once you as a caregiver accept that hoarding by Alzheimer’s patients is a normal behaviour, you can easily plan for and cope with surprises that you may find as you discover their hiding places.

The reality of Alzheimer’s hits home when mom or dad can no longer be cared for and have to be institutionalized.  Family caregivers have to deal with feelings of guilt associated with locking their parents away.  It’s a difficult decision, one that’s compounded by watching their loved ones drugged into submission.

As Alzheimer’s progresses, patients tend to exhibit more symptoms.  Delusions, hallucinations, sleeplessness and paranoia are commonplace.  Aggression and violent behaviour becomes more and more frequent.

Facilities designed to care for Alzheimer’s patients will often prescribe antipsychotic drugs to deal with these symptoms.  The result of this course of treatment turns mom or dad into mindless zombies and the patients labelled as “problems patients” are drugged into submission.

Witnessing a parent who was vibrant and active suddenly sedate and immobile will upset families.

Is it wrong for institutions to take this course of treatment for the Alzheimer’s patients?  Are their alternatives to antipsychotic drugs?  Are other things causing the behaviours that could signal something else happening to the patient?

As a first course of treatment, using antipsychotic drugs to treat Alzheimer’s is wrong.

While there may be challenging behaviours being shown by the people affected with this brain disease, there may be some underlying condition causing them to be inconsolable or in a state of persistent distress.

Family caregivers should not accept antipsychotics as a first course of treatment and they should become advocates for their loved ones.  There may be another medical condition causing the decline and symptoms may exist to point to other conditions preventing the patient from receiving the care necessary to curb the “undesirable” behaviour.

Before turning to antipsychotics to treat Alzheimer’s or any dementia, it is important to have the patient undergo a full medical evaluation to ensure some other health issue is not causing or at least contributing to the problem.

As a family caregiver, chances are you have legal authority to make medical decisions regarding your parent.  Insist on a consultation with a neurologist, geriatric psychiatrist or geriatrician before approving the use of antipsychotic medications on the Alzheimer’s patient.

This is your right!

Institutions given authority to prescribe antipsychotics to Alzheimer’s patients generally do so in high doses.  This will turn your loved one into a zombie.  This will put your loved one in a state of coma.  This will cause a rapid deterioration of your loved ones health.

These drugs may be effective at improving the quality of life of Alzheimer’s patients when prescribed in doses that do not overly sedate.  However, it is common practice to use these drugs to improve the quality of life of the workers given the responsibility to care for the patients themselves by drugging the patients into submission.

Using antipsychotic drugs properly with a proper plan of care will improve the quality of life of the Alzheimer’s patient and will also improve the quality of life for the caregiver.  It won’t change the fact the person is still suffering from Alzheimer’s or dementia but the problem behaviours can be reduced.

Antipsychotic drugs have very dangerous side effects especially at the levels typically used to sedate Alzheimer’s patients into submission.  These drugs raise the risk of heart attack and stroke, and have been shown to cause death in older adults, the exact demographic that generally suffers from Alzheimer’s and dementia.

Quite often, antipsychotic drugs have never been officially approved for treatment of dementia or Alzheimer’s based behaviours.  The drugs are prescribed through a practice called off-label prescribing.

This is not to say antipsychotics don’t have a place in treating Alzheimer’s patients.  They can and have shown to have benefits when used in smaller doses.

As a family caregiver, it is important you weigh the pros and cons of using these drugs.  They can provide a balance and restore a quality of life the Alzheimer’s patient has not seen in some time.

However, facing the reality that this is a disease that will progress and will reduce the life of your loved one may have to factor in when making a treatment decision.

There are some difficult decisions you will have to make and do some soul-searching.  How long will your parent live with the disease?  Are you prepared to have their lives shortened by using antipsychotic drugs?  Are you willing to sit and watch your loved one being drugged into submission?  How will you cope with the guilt this will cause in yourself?

At the end of the day you are still the caregiver.  You have to make the decisions and be the advocate for your parents.  Never give blanket approval for using antipsychotics without talking to other healthcare professionals.

Make the best decision for your loved one and for your own peace of mind.

In speaking with Alzheimer’s caregivers many have notice the person they are responsible does the same thing.  Experts in the brain disease have theories as to why this occurs but there aren’t any hard facts to prove why Alzheimer’s people wander.

Why does an Alzheimer patient wander?

As Alzheimer’s Disease progresses, caregivers generally become more concerned with their safety.  It isn’t as straightforward as the disease causes this behaviour.  Prior to being diagnosed, this behaviour may have been considered normal everyday activity, similar to most people going for a walk for exercise.

Because Alzheimer’s patients become disoriented and lose their sense of reasoning and their cognitive function, this behaviour gets labelled as wandering.  If the patient becomes disoriented while out on a stroll it is easier for them to become lost and unable to return home.  This will make the behaviour appear more like mindless wandering.

There are theories around why Alzheimer’s people wander.  Some believe they become bored with the level of care they are receiving and want to escape being restrained to the same “safe” and “simple” behaviours.  They want to do something more challenging and go looking for different environments to stimulate themselves as a form of self-medicated therapy.

Some have speculated they recall memories of their former lives and are looking for something to remind them of how things used to be.  Why others feel they simply want to be anywhere and to be doing something.

This behaviour has also been seen in people suffering with dementia.

How do you deal with an Alzheimer’s person who is prone to wandering?

As a caregiver, it is important to recognize the behaviour and build a routine around it.  Create a walking program that will have you involved with their “wandering” and use it to your advantage as part of the care provided.  Take them on walks to familiar settings around the garden or a park.  Have them interact with people there and encourage this interaction to stimulate their minds.

Keep in mind the urge to wander can hit an Alzheimer’s person at anytime.  As the disease progresses, you must be prepared for them talking their stroll at anytime of the day or night.  Sundowning or Sundown Syndrome may spark a period of unrest where Alzheimer’s patients will want to wander as well.

Ensure the doors are secured when you are asleep and take some precautions to alert you should they attempt to get out of your care.

Hanging a set of bells on the door-handle or installing a buzzer that activates when the door opens can alert the caregiver that someone has opened the door.

Other hi-tech solutions such as ankle bracelets and GPS units may be available through your local Alzheimer’s Society to assist you in finding them if they do get out unnoticed.  Provide the local police departments with a picture of the Alzheimer’s patient with their home address and emergency contact numbers.  This way they can contact the caregiver immediately should the Alzheimer’s wanderer be found.

While in your care, if you are noticing they are attempting to leave and wander, call out to them by their name.  If they are your mother or father, “mom” and “dad” will not work because this brain disease often places the people back in their mind to a time when they were much younger when they were not mom or dad.

Ultimately you can look to having the person fixed with a non-removable ID such as a bracelet, anklet or dog tag.  You can include their name, contact number and their condition on these tags.  Having them affixed to their person and not on a piece of clothing is crucial because Alzheimer’s people tend to lose their wallets, purses and jackets rather easily.

Planning for the safe care of an Alzheimer’s person will allow the caregiver to cope with the wandering and provide a much healthier living environment for the patient.

Alzheimer’s is a form of dementia characterized by a loss of memory, cognitive ability and behaviour.  There is no cure for this degenerative brain disease and there is no known cause.  However, research into Alzheimer’s has shown there are factors that increase a person’s risk at being diagnosed with the disease.

Some of the risk factors associated with Alzheimer’s include age, family history and genetics.  Other risk factors associated with lifestyle have also been linked to Alzheimer’s and without a cure it is imperative people take preventative measures to reduce the risk of being diagnosed with the disease.

Recent studies have linked an increase risk of Alzheimer’s with diabetes.  People with high blood sugar have been shown to be twice as likely to develop the disease as those with normal glucose levels.  Those people treated with insulin may develop an insulin resistance that can lead to complications associated with diabetes.  This may harm the brain cells directly or the blood vessels carrying oxygen rich and nutrient rich blood to the brain.

Keeping a close eye on diet to control blood sugar may ultimately reduce the risk associated with Alzheimer’s.

Other research has also shown that lack of physical activity may increase the risk associated with Alzheimer’s and other diseases.

Regular physical activity and exercise not only improves your heart but your brain.  Having an increased flow of blood and oxygen has been shown to benefit brain cells, thus reducing the risks associated with Alzheimer’s.

Researchers inJapanhave also shown a connection between high cholesterol and Alzheimer’s.  People suffering from high cholesterol were more likely to have brain plaques when compared to people with normal or lower cholesterol levels.

Having your cholesterol checked regularly and controlling its level helps maintain the health of your heart and blood vessels reduces blood pressure and minimizes risk associated with Alzheimer’s.

While the exact cause of this brain disease is not fully understood, continued research has shown making changes to lifestyle and taking certain preventative measures associated with healthier living can reduce your risk of Alzheimer’s.

Brain shrinkage, memory loss and reduced brain function have long been associated with the progression of Alzheimer’s.  Experts had speculated this was permanent but researchers from Canada have shown this may not be the case.  By using a technique known as deep brain stimulation they were able to show growth in the brain’s memory hub, reversing its decline.

While previously used with both Parkinson’s, Tourette’s Syndrome patients and those suffering from forms of depression, deep brain stimulation involves apply electricity directly to the regions of the brain identified through an MRI.

With a patient’s head stablized in a a fixed position, a small region of the brain is exposed and thin electrodes are placed next to the portion of the brain requiring stimulation.  These electrodes are attached to a small battery implanted next to the collar bone, resulting in electricity flowing through the electrodes into the affected areas of the brain.

Research has shown the hippocampus is one of the first regions of the brain to shrink in Alzheimer’s patients.  This portion of the brain is used for converting short-term memories into longer term memories.  Early stages of Alzheimer’s are shown as this area becomes damaged by the disease, resulting in memory loss and disorientation.

As Alzheimer’s progresses, brain cells throughout the entire brain are affected and are either dead or dying.

The researchers at the University of Toronto applied deep brain stimulation to the fornix of the brain, the part which passes messages to the hippocampus.  Normally patients suffering from Alzheimer’s would show five percent shrinkage of the hippocampus per year.  However, after twelve months of deep brain stimulation, one patient had a five percent growth and another an eight percent increase.

This is the first time deep brain stimulation has shown growth in any area of the brain and in one of the Alzheimer’s patients, it was like his disease had reversed.

Exactly how deep brain stimulation works with Alzheimer’s patients is unknown.  It is also important to note the sample size was relatively small and there has yet to be any follow up done to determine if memory has improved.

Regardless, this is encouraging because it may signal the ability to delay the onset of Alzheimer’s Disease several years.

I’ve locked them in a home, abandoned them for the rest of their lives.  It’s going to kill them and I’m the person responsible.

Do you know how difficult it is accepting that reality?

People look at me and know what I’ve done.  They judge me for tossing my parents aside.

I’ve become a terrible person and don’t know if my parents will ever be able to forgive me for what I’ve done.  Not a day goes by that I don’t question what I’ve done.  I question my decision each time I go to see them.

Mom cries when she sees me.  She asks if we’re going home soon.

Dad doesn’t know me but smiles when I say who I am.  His eyes light just a little before he’s sucked back into the darkness of Alzheimer’s.

The doctors and nurses have no sympathy for me or my parents.  They are concerned with making their own lives easier.  They use drugs to chemically restrain my parents.

When that doesn’t work there’s always that god damn chair.  You don’t know hell until you see your loved one strapped in a chair, a drool puddle about them on the floor.

It’s for their own protection I’m told.

I know the difference.

We treat animals better.

They use the chair to avoid having to work and deal with those things that make this disease horrible.  They have no sympathy for those they care about.  They strip their dignity, place them in a diaper and tie them to that god damn chair.

I advocate for my parents but the system is designed to wear me down.  I argue and fight but the institution pushes back until I can’t fight anymore.

They question my sanity, my ability to cope with what I’ve done.

Have they read my mind?

It hurts but I know for me to survive, I have to accept the reality I’ve helped create.  I have to live with what I have done.

I’ve institutionalized my parents but I’m the one that’s trapped.  I’m trapped in guilt watching the only people in this world to have ever loved me unconditionally subjected to legalized abuse from an institution I once admired.

I pray for my parents’  death.  Death would release them from this horrid disease.

I question whether this is what I really want because deep down I know I’m praying for relief to my own guilt and anguish over what I’ve done.

Death would release them and allow me to mourn.

The study was a retrospective analysis comparing veterans with traumatic brain injury (TBI) to those with no TBI and indicated over a 7-year period, the risk of dementia was more than doubled.

Presented at the Alzheimer’s Association International Conference 2011, it is hoped this new research will provide insight into ways to treat or rehabilitate patients suffering from brain injury.

The study isn’t without its critics.  Some studies have suggested there is no correlation between risk and brain injury.  Yet researchers showed a clear relation between brain injury and dementia in this study.

While conducted on veterans, study researchers indicated the research had implications on the general population.  It highlights the importance for protecting the skull and brain.

While Alzheimer’s may start at any age, the most common form of the disease starts after a person reaches 65 years old and continues to increase in frequency as people age.

With much effort put into identifying which genes may be relevant to the development of Alzheimer’s up until this point there was only one gene previously identified.

While we all have these genes, some individuals have specific variations that lead to the development of Alzheimer’s.

The researchers have identified through a complex statistical model, the relevance of these genes and which variations are important.  Having these genetic variations does not mean a person will develop the brain disease but they do affect the chances of getting Alzheimer’s.

Certain genes are causing Alzheimer’s disease in a dominant way and can lead to multiple generations being affected.  These new genes increase the susceptibility to developing Alzheimer’s but there is no certainty.  It simply signifies an increased risk for each person.

The discovery of these new genes for Alzheimer’s does not mean there is a way to diagnose the brain disorder.  The number of genetic combinations and factors that may come into play makes using them as a diagnostic tool for Alzheimer’s disease very premature.

It is hoped the discovery of these new Alzheimer’s genes will lead to a better understanding of the cellular pathways that lead to the disease.

Using this understanding, it is hoped potential Alzheimer’s treatments and diagnosis may be developed.

Screening for Alzheimer’s normally focuses upon warning signs such as memory loss, difficulty performing familiar tasks and confusion with time or place.  Often these symptoms are mistaken as part of normal aging but in fact signal the onset of Alzheimer’s.

As part of regular screening for the brain disease, some Alzheimer’s specialists regularly conduct MRI scans to examine the structure of the brain and monitor changes.  Identifying shrinking in the memory centre or hippocampus and other areas of the brain may provide clues to the progression of Alzheimer’s normally missed.

Establishing a baseline for Alzheimer’s screening and evaluating a patient’s progression may provide some standard tests doctors can use to determine what is impacting a patient’s memory.

Experts and researchers agree, diagnostic tests for screening for Alzheimer’s need to be developed and may be just around the corner as more and more focus is put on assessing risk.