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 caregivers are often family members who provide in-home care for approximately 70 percent of those diagnosed with Alzheimer’s disease and dementia.  With an aging population this means that the primary Alzheimer’s caregiver is quite often an elderly spouse with their own medical problems.

Alzheimer’s caregivers are subjected to enormous amounts of stress brought on largely by the demands associated with caring for an Alzheimer’s patient.  Caregivers often fail to take time for themselves and caring for their loved one as a duty.

Many people who find themselves in the role of being an Alzheimer’s caregiver lack both the knowledge and training required to care for a person who is suffering from Alzheimer’s disease.  Quite often the Alzheimer’s caregiver does not know how to respond to behavioural changes associated with Alzheimer’s.

Local Alzheimer’s associations will often have support groups and will provide training for those who find themselves in the role of Alzheimer’s caregiver as well as information on various government programs available to assist in the caring of the Alzheimer’s patient.  These support groups are filled with people who know what to expect of this brain disease and willing to provide assistance to the Alzheimer’s caregiver.

Being an Alzheimer’s caregiver often means putting ones life on hold but as a family member it is important to realize that having a loved one diagnosed with Alzheimer’s disease is nothing shameful.  Asking for help is okay and is not an indication of failure as an Alzheimer’s caregiver.

While the exact cause of sundown syndrome is not known, many speculate people suffering from Alzheimer’s disease and dementia have somehow had their biological clock altered because of a reduction in brain function.  With an altered internal clock, people with Alzheimer’s and dementia are suspected to have difficulty regulating behaviour and activity associated with different times of the day.

Several researchers have also theorized that sundown syndrome may be associated with a drop in blood pressure after a meal, hunger or changes in blood glucose levels may trigger periods of confusion and agitation.

In dealing with sundown syndrome, Alzheimer’s disease caregivers are often left determining what causes the periods of agitation and confusion.  Sundown syndrome triggers can vary greatly from Alzheimer’s patient to Alzheimer’s patient, leaving caregivers often at a loss at how to calm the patient.

When dealing with an Alzheimer’s disease patient prone to sundown syndrome, using full spectrum lighting to simulate sunlight may alleviate sundown symptoms.  Regulating snacks and diet may help if sundown syndrome is triggered by diet.

Some Alzheimer’s caregivers have indicated they have success with sundown syndrome if they play a person’s favourite music or move them to a quiet room.  Others have indicated using relaxation techniques and a gentle touch helps calm Alzheimer’s patients dealing with sundown syndrome.

It is important to recognize that Alzheimer’s patients experiencing sundown syndrome need reassurance and understanding of the Alzheimer’s caregiver.  Recognizing triggers and alleviating triggers known to cause sundown syndrome will make both the Alzheimer’s caregiver and Alzheimer’s patient cope with the situation at hand.

It is estimated that these dramatically rising numbers will mean that 1.125 million people or 2.8 percent of Canadians will suffer from a form of dementia or Alzheimer’s disease by 2038.  According to The Impact of Dementia on Canadian Society the impacts of this disease will cost approximately $872 billion in care and result in a tenfold increase in the demand for nursing beds.

According to Mark Burnett of the Hamilton-Halton, Brantford and Haldimand-Norfolk Alzheimer’s societies, they are receiving 150 new referrals of Alzheimer’s disease patients a month.  Burnett attributes this rise to Alzheimer’s awareness campaigns aimed at earlier identification and diagnosis of Alzheimer’s disease and dementia.

These latest number provided in the report by the Alzheimer’s Society of Canada highlights research on ways to reduce the risk associated with developing dementia and to enhance quality of life after diagnosis with dementia and Alzheimer’s.  To help reduce the impact of dementia, the Alzheimer’s Society of Canada recommends taking steps including:

• Prevention programs that promote healthy diets and physical activity that can delay the onset of dementia by two years;
• Skill-building and support programs for family and caregivers responsible for dementia and Alzheimer’s disease patients;
• Assigning case managers to newly diagnosed dementia and Alzheimer’s patients which would facilitate in-home care longer, thus lessening strain on the long-term care system

With no cure for Alzheimer’s disease or dementia, the society wants to see increased funding to deal with the projected increase in Alzheimer’s and dementia patients to help address proejcted shortages in the system.