Tuesday, 19 January 2016


In her articles, Angela Lunde of Mayo Clinic remarked that, for a long time I have said to caregivers "Blame the disease, not the person. It's a way to help caregivers separate the person with Alzheimer's disease from some undesirable behaviour, and to appreciate that the person with dementia is not intentionally acting bad or trying to upset, frustrate or annoy caregivers. I still maintain this notion, and certainly we should not blame the person for their disease. Yet, I want to be cautious that we do not simply dismiss or blame the behaviours on the dementia. To do so can have tremendous consequences on the overall well-being of the person with dementia, as well as to you, the caregiver."

It makes sense that behaviours such as agitation, yelling, hitting or  uncooperativeness are part of a brain dysfunction linked to dementia, but here's what we want to make clearer — dementia itself does not create these behaviours. The environment, physical discomfort (pain for example), our approach and communication style are just a few things that can have a person with dementia behaving in a particular way.

Dementia has been described as a type of disability where one's experience of the world is shifting over time, and that the distress or behaviours exhibited by a person with dementia are purely an expression of need. Most of us probably believe that much of human behaviour is motivated by specific needs that have to be met. Abraham Maslow, a psychologist, talks about basic human needs — food, warmth, sleep, safety and security, as well as higher order needs such as the need for affection, belonging, love and self-esteem.

A person with dementia has both basic and higher order needs, including those for social contact, physical touch, praise, and a sense of belonging, purpose and control. Yet for people with dementia, their ability to satisfy these needs on their own diminishes over time and can go unrecognized. And as persons with dementia lose their ability to communicate their needs effectively through words and language, overt behaviours fill the void. In other words, behaviour is communication.

Caregivers as well as doctors and other professionals tend to label behaviours with words such as difficult, disruptive or, worse yet will label a person with dementia as combative, resistive or challenging. Yet behaviours are simply communication tools when language and other means of coping are no longer available. I believe one of the best things we can do for a person with dementia is to shift our way of thinking and view behaviours as neither good nor bad, but as a bold sign that there is an unmet need that requires attention.

If you accept that, then we as caregivers (family, friends) can play an enormous role in easing (and preventing) distress for the person with dementia and ultimately ourselves. Teepa Snow, an extraordinary dementia education and care specialist said recently, "If we can help care partners see the 'behaviours' as the tip of the iceberg and as something to be curious about, to investigate and to explore, rather than to judge, then we can change the entire paradigm."

As a family or professional caregiver how do you begin to investigate, explore and figure out the unmet need? Family caregivers may have an upper hand here because they understand better than anyone the personality traits, life history and personal preferences of the person with dementia. This understanding offers important clues. Yet family members can also struggle the most because this shift requires letting go of the person as they once were, altering expectations and changing well established patterns of communication.

There are more insights as well as specific techniques and strategies for uncovering the message (unmet need) behind the behaviour.

It is important to see challenging behaviours as symptoms instead of problems. Think about this analogy: You have an infection and develop fever. The fever is a symptom of the infection. If we simply see your fever as the problem, we will only treat the fever. While this might reduce some of your discomfort for a time, the fever will eventually return and you will get worse because nothing was done for the real problem — the infection. Similarly, to better manage behaviour symptoms in a person with dementia, we need to uncover and address the real source of the problem.

As a caregiver this can seem like one more role to take on — that of a detective assigned to uncover the real problem. Yet the goal here is not to add more burden or pressure to the caregivers. If caregivers can identify triggers, learn some techniques and skills, and are willing to employ them, the result will be fewer unmet needs and consequently less behaviour that challenge and wear down caregivers. In this regard, the quality of life for the caregiver can improve.

Just what potentially are these unmet needs, the real problems? Unmet needs generally fall into one of three broad areas:

·           Personal health
·           Physical environment
·           Social environment

In other words, behaviours can be an expression of a health need or an outcome of the interaction between the person with dementia and their physical or social environment.

Let's start with physical health. Persons with dementia are often limited in their ability to identify, understand or articulate when they are in pain, feel uncomfortable, are sad or are disorientated due to physical limitations. The following represent some common health issues that are often overlooked in people with dementia as potential problems leading to behaviour symptoms:

·       Fatigue due to poor sleep.
·       Presence of a medical condition such as an infection (for example, urinary tract infection).
·       Clinical depression.
·       Vision loss or lack of proper eyeglasses.
·       Hearing loss or lack of working hearing aid (check batteries).
·       Constipation.
·       Dehydration.
·       Need to urinate.
·       Hunger.

It is important to always consider these and other health conditions that may be contributors to the behaviour symptoms. It would make sense that if a person is fatigued, hungry or in pain, and is unable to articulate or take care of the need independently, that they would express anger, agitation or even aggression.

Behaviour symptoms also can be related to the physical environment. We now understand how powerful environmental factors are in triggering behavioural symptoms. Individuals with dementia experience increasing vulnerability and a lower tolerance to stress in their environments. We may like to think of the environmental contributors to stress in persons with dementia in three areas: physical space, daily routine and structure, and sensory stimulation.

ü Physical space
The good news is that we, as caregivers, can use the environment to our advantage because we can control and modify the environment. This means that we can play a significant role in reducing environment-related stress. We can often prevent problems, and therefore behaviours, by creating a supportive environment. In addition, we can sometimes manage behaviour (unmet need) by altering the environment in some way.

As we think about how someone with dementia interprets and perceives their environment, we can make some basic modifications to help that person feel less confused and more in control.

Strategies such as placing a clock and calendar in plain sight, reducing clutter, and keeping household objects and furniture in the same places will reduce confusion and maintain a feeling of control. Displaying familiar objects and photographs will offer a sense of security. Labelling spaces with signs, pictures or colour arrows will help people with dementia find their way around the house.

ü Sensory stimulation
Ambiance, sound and light can all play a role in whether a person with dementia experiences a sense of calm or stress. Well lit spaces without confusing glares or shadows, low noise levels and generally quiet surroundings can reduce confusion and stress for a person with dementia.

Some levels of activity can be over-stimulating for person with dementia and a potential trigger for irritability. On the other hand, a person with dementia may be irritable because they are bored or lonely, and lack sensory stimulation. An environment that appropriately stimulates the senses, including sight, sound, taste and smell, offers a unique opportunity to ensure the overall well-being of the person with dementia (thus decrease behaviour symptoms).

The use of aromatherapy is a growing field of complementary therapy. Essential oils used in aromatherapy have been found to be safe and have shown some positive results for promoting a sense of calm and even reducing agitation.

Music has a way of having a positive impact on people with dementia. Certain types of music calm and relieve tension and anxiety, while other types of music can be uplifting and improve mood.

ü Daily routine and structure
People with dementia will benefit from routine and consistency. Keeping regular times for activities, such as waking up, mealtimes, bathing, dressing, exercising and bedtime, can help orientate the person and offer a sense of security. Similarly, offering cues to distinguish the different times of day can be done by opening the curtains in the morning to let the light in. An evening ritual like playing meditative music or the use of aromatic oils may help to signal the end of the day.

Sometimes, we simply cannot prevent behaviour but we can accommodate it instead. For example, wandering or pacing is common in persons with dementia and can be a symptom with many causes. Caregivers can accommodate this by creating a safe physical space where the loved one can pace or wander with minimal risk.

Dementia is clearly a condition where a person's ability to maintain his or her own well-being is compromised. This results in expressions of distress.

(Source:  Angela Lunde of Mayo Clinic)

Monday, 18 January 2016


Researchers find conditions such as high blood pressure, smoking may contribute to risk.

Psychosis, including delusions and hallucinations, affects about half of Alzheimer's disease patients and researchers have set out to clarify the link between these two conditions.

Canadian researchers said they found that cerebrovascular disease, a group of conditions that restrict the circulation of blood to the brain, appears to play a significant role in psychosis for those with Alzheimer's disease.

About 19 percent of people with Alzheimer's disease living in the community (rather than in a nursing home) have delusions. Another 14 percent have hallucinations, the researchers said.

Psychotic symptoms among people with Alzheimer's disease can cause added burdens on loved ones and caregivers. These symptoms can also speed up the progression of Alzheimer's disease, the study authors explained.

For the study, the researchers analyzed autopsy data from more than 1,000 people who had been treated at 29 Alzheimer's centers in the United States between 2005 and 2012. An Alzheimer's disease diagnosis can only be confirmed after death by autopsy.

The research team led by Dr. Corinne Fischer from St. Michael's Hospital in Toronto said that 890 of the study patients had been clinically diagnosed with Alzheimer's disease while still alive. Of those, nearly 730 had Alzheimer's disease that was confirmed by an autopsy, according to the report published on 5 January 2016 in the Journal of Alzheimer's Disease.

The autopsies revealed that those with confirmed Alzheimer's disease who had been diagnosed with psychosis didn't have more physical evidence of Alzheimer's disease in their brains (such as protein deposits).

Instead, the researchers were surprised to learn that risk factors linked to blood vessel problems such as, high blood pressure, diabetes and smoking history, appeared to be strongly related to psychosis.

Because researchers haven't known the underlying reason for psychosis in Alzheimer's disease patients, they've been limited in how well they can treat the issue, the study authors explained in a hospital news release.

(Source: Health Day -  St. Michael's Hospital, News Release, 5 January 2016)