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Dementia Aware  

Dementia and behaviour

What you need to know about the management of behaviours in the person with dementia

Behaviour is a complex phenomenon affected by interaction of cognitive impairment, physical health, mental health, past habits, personality and environmental factors.

The regression of dementia is more than just the loss of brain cells.

For people with dementia, the impairment in cognition, difficulties in social settings and in day-to-day, self-care activities, can make them increasingly isolated and detached from the world, and they start to feel a loss of social connectedness and belonging.

With loss of identity, of independence and control, comes a loss of personal security and with increasing insecurity comes a sense of powerlessness and behaviours such as jealousy, paranoia, shadowing, agitation may occur.

Most people with dementia will also exhibit a loss of ability to control impulses and to manage stress and may ‘act out’ with childlike frustration.

As the dementia continues to regress and the person requires more assistance with ADLs (bathing, toileting) feelings of embarrassment, shame, and anxiety may show as aggressive behaviour.

It can be very upsetting and stressful for the caregiver (family) to see their loved one behaving in a strange or atypical way. Many caregivers report feelings of shame and embarrassment, frustration, helplessness, emotional pain and great anguish as they try to help the person with dementia.

When a person with dementia exhibits a behaviour, it is important to try to remember that:

  • The behaviour is not planned or deliberate
  • The behaviour is an expression of an unmet need
  • There is always a reason for the behaviour — people with Lewy Body dementia usually experience hallucinations/delusions, whilst people with frontotemporal dementia typically experience disinhibited behaviours

The main reasons for behaviour include:

  • Pain, discomfort or feeling unwell
  • Loneliness and lack of social contact
  • Boredom and/or inactivity
  • Sensory deprivation
  • Depression
  • Fear
  • Response to delusions/hallucinations
  • Environmental regression: a sudden change in daily routine (house re-modelling, favourite chair moved), which creates great stress and anxiety
  • Sundowning: people with dementia may become more confused, restless, upset, suspicious late in the afternoon/early evening. Whilst no one is sure what causes sundowning, it seems to result from changes that are occurring in the brain and may relate to sleep disruption or lack of sensory stimulation after dark.

For the person with dementia, the inability to express clearly what is happening is both terrifying and confusing, therefore, it is important to try to understand why the person with dementia is behaving this way.

If you can determine what may be triggering the behaviour — personal care, soiled clothing — it may be easier to figure out ways to manage the behaviour. Any behaviour changes and the impact on caregiver/family should always be discussed with your doctor.

For the more challenging behaviours, medications may be prescribed, however, these medications do have side effects with negative consequences e.g. increased drowsiness, increased falls risk, and their long-term use is generally not encouraged.

Before you reach for medications, ask yourself whether the person with dementia is:

  • Tired
  • Hungry or thirsty
  • In pain or appears uncomfortable (constipated)
  • Frustrated or looking for something e.g. glasses, hearing aide
  • Reacting to a change in the environment e.g. noise, unfamiliar place
  • Trying to tell you something
  • Needs to go to the washroom or is incontinent
  • Upset
  • Bored
  • Having a reaction to medication, or if diabetic, blood sugar low/high
  • Experiencing delirium

Interventions that might help:

  • Take a deep breath and remain calm
  • Do not shout, grab at, argue with, or correct person with dementia
  • Position self below person’s eye level (avoid staring at or looking down on person)
  • Turn up lights
  • Reduce stimulation: turn off TV, radio
  • Offer food, fluids
  • Ensure person with dementia has glasses, mobility aide, hearing aide
  • Assist with toilet/personal care (if able too)
  • Try aromatherapy e.g. lavender oil
  • Massage shoulders, light strokes to face/hands, place your hand under person’s hand (helps give person with dementia a sense of control, is less threatening, and promotes sense of trust)
  • Distract person: look at photographs, play a game, make a cup of tea
  • Go for a walk or sit in garden
  • Offer reassurance and validate feelings. Validation is not lying, consider it avoiding or challenging person with dementia’s reality, do not correct his/her beliefs, but instead, just be with them in the moment

Managing changed behaviours can be very difficult, and is often a matter of trial and error. Some days, it may feel as if everything the caregiver does to help the person is ineffective.

If the person is safe, the best thing to do is to leave him/her alone; take a deep breath and go for a short walk, call a friend, neighbour, family, your doctor, or the First Link dementia helpline at 1-800-936-6033 for support and help.

If behaviours become worse and the person becomes unmanageable, or appears at risk of harming self or others; call 911 immediately.



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The language of dementia

What you need to know about communicating with a person with dementia

Communication is an inherent mutual activity and we cannot be truly in relationship with others if we are not communicating with them.

When communicating with people with dementia, caregivers need the flexibility to be able to communicate on several different levels. Many caregivers report feelings of frustration, inadequacy in understanding and responding to the person with dementia’s attempts to communicate.

Many problem behaviours exhibited by people with dementia can be attempts to communicate — feeling hungry, want to go to the toilet. Grabbing, moaning, pointing, is often incorrectly interpreted as the dementia rather than the failed attempt to communicate.

Facilitating communication for every-day purposes requires a great deal of sensitivity and patience and a determination not to give up on someone whose speech may be slow or difficult to comprehend.

Communication Strategies:

  • Ensure person can see you (glasses on)
  • Ensure person can hear you, wears hearing aid; try to reduce background noises — radio
  • Sit close to person, reassure by physical contact — touch arm or shoulder
  • Speak in a gentle, caring manner
  • Keep it simple, ask one question at a time
  • Try not to interrupt the flow of conversation by asking questions requiring a response
  • Allow time
  • Limit choices: people with dementia are often confused by direct, open-ended questions such as “what would you like for lunch?” Or by rapid fire presentation of several choices, “would you like soup, salad or a sandwich?” 
  • Point to, or show the item you are talking about 
  • Ask the person with dementia to point or show you
  • Be conscious of your clothing. As we age, the lens of the eyes start yellowing, and for many people with dementia, it can cause colour agnosia. This, along with impaired perception, causes them to misinterpret sharp colour contrast and patterns especially busy patterns, which can cause dizziness and may even appear to move.

Common problems:

Perseveration

  • Repeats phrases, questions or key words over and over
  • Person may be worried about something and need reassurance or want something to change. For example, when’s Joan coming? The message may be as simple as I’m lonely and I want to see my wife.

Paraphasia

  • Speech is inconsequential, vague, and go around in circles
  • Try to go with the flow
  • Pick up on any phrases at which the person seems to become excited/animated and respond to these.

Nominal dysphasia

  • May call you by the name of someone else
  • The person with dementia may think you are someone else because your mannerism or appearance reminds them of someone.

Echolalia

  • Repeats your own words back to you when you ask a question
  • This could be a request for clarification, or for you to slow down a little
  • Or, it may be just a game. If the person with dementia seems to enjoy this kind of interaction, then go along with it

Confabulation

  • Covers up memory problems by turning questions back to person or gives inaccurate information
  • The person may enjoy story telling, or may feel need to make self more interesting. 
  • If information is required for official purposes, then accuracy of information should be verified with another person.

Aphasia 

  • Rarely or never speaks
  • Ensure you are waiting long enough for a response
  • Watch for non-verbal indicators of what the person may be feeling or trying to tell you

Dysphasia

  • Difficulty selecting the right words and becomes easily anxious/frustrated
  • Try to respond to the sense of what the person is saying and give positive, non-verbal signals
  • Ask person to show you
  • Offer cues, rather than being tempted to speak for the person.

Each person with dementia is different, therefore, some of the following suggestions will work for some, but not for others: 

  • Don’t argue or confront the person with dementia. You will never win the argument. Instead, you will end up feeling stressed and frustrated and the person with dementia may become upset and angry
  • Don’t tell the person what they can’t do. Reframe in a positive light by emphasizing what they can do
  • If the person is struggling with a task or appears lost, do not say, “what are you doing?” instead ask, “can I help you?”
  • Don’t be critical, condescending, or judgmental. Even if the words don’t make sense, the tone of voice and facial expressions can be picked up by the person, and people with dementia seem to have a heightened awareness of body language
  • Don’t talk in front of the person as if he/she is not present. The person with dementia does not have to be able to participate in a discussion actively to enjoy it and benefit from it
  • Don’t remind the person that something was forgotten or repeated
  • Use “therapeutic fibbing.” People with dementia struggle with logic, rational thought, sequencing and emotional content. When telling the truth would cause pain, anxiety or increased confusion or the person is experiencing life in a different time era, it is kinder and more respectful to redirect and distract person and to be present with them in their world 
  • The arts: painting, music, dance, colouring books, provide people with dementia who are unable to communicate verbally an outlet to express their thoughts
  • When all else fails, take a deep breath, keep trying, and try to find humour in the situation and laugh with the person with dementia.


You have dementia!

What you need to know about the emotional responses to a diagnosis of dementia

At the first World Health Organization Ministerial Conference on Global Action Against Dementia (2015), Margaret Chan, director Genera of the WHO, opened with this statement:

“I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity.

"I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care.

"I can think of no other disease that places such a heavy burden on families, communities, and societies.”

Learning that you (or a loved one) has dementia can be devastating. Suddenly, all your hopes, your dreams, and your plans for the future are extinguished. From this moment, everything changes, life will never be the same again, and how you react to the diagnosis and move forward, will be influenced by many factors:

  • Your personality
  • Your health
  • Your biography
  • Your religious/spiritual beliefs
  • Your previous coping methods
  • Your ethnicity
  • Your type of dementia e.g. Alzheimer’s, Frontal lobe
  • Your mental health e.g. anxiety disorder, depression, schizophrenia

People with dementia and their caregivers report that upon hearing the diagnosis, the first reactions are usually one of shock and disbelief.

These feelings may last for hours or even days, but eventually, they give way to feelings of grief and sadness, of fear and of a sense of helplessness; ‘what do I do now?’ (see article #3).

There may also be feelings of:

  • anger
  • despair
  • frustration
  • anxiety
  • hopelessness
  • embarrassment
  • denial

All these reactions are normal responses as you (caregiver/family) try to make sense out of the news. Each day will be different; one day you may feel angry, the next day you may feel sad.

One lady with Alzheimer’s disease said, “it feels as though my brain is being taken away, bit by bit.”

For many, especially in the early stages of dementia, the physical capacity to carry out tasks remain intact, but the memory loss coupled with frustration, grief, or anxiety can reduce the person with dementia’s confidence and make him/her more angrier and/or depressed.

If the person with dementia appears to be having difficulty, it is important to follow up with the doctor for an assessment, and to determine if any treatments may help e.g. medications, referral to geriatric psychiatrist or counsellor.

You may also experience:

  • Sleep disturbance
  • Appetite changes
  • Becoming preoccupied with finding information about your type of dementia
  • Crying at unexpected times
  • Stop seeing friends, participating in social events (withdrawal)
  • Becoming more confused (due to a lowered stress threshold, the brain is less able to cope with sudden changes)
  • Feeling less confident

This is a very difficult time in your life. Living with dementia is an emotional as well as a cognitive experience. You will feel scared, scared of what may happen to you, scared of the unknown.

It is during this time, that you may, out of fear and anxiety about your future, ask a loved one to make a promise that he/she may be unable to keep e.g. promise me you’ll never send me to a nursing home, promise me you’ll help me die.

These requests, whilst perfectly understandable, place a tremendous burden on the caregiver. Your caregiver will do everything possible to keep you safe, cared for and loved; however, circumstances change, and your loved one, through no choice of their own, may be unable to fulfill the promise.

Dementia is like embarking on a journey with no map. It won’t be easy; activities that had once been easy and taken for granted now require careful thought and attention.

The pace of every-day life slows down, and any activity takes longer, often to the point where the person with dementia may find him/herself lost in time itself.

To help reduce frustration, take back control, and start to enjoy life: plan for the future, live in the moment.

To move forward, you should:

  • Slow down
  • Give yourself time to complete a task
  • Do one task at a time
  • Keep active (physically and socially)
  • Maintain a daily routine
  • Try to keep a positive outlook
  • Record your thoughts and feelings: in a journal or a video recording
  • Keep a diary, make lists, record important dates on a calendar
  • Remain hopeful
  • Find an outlet to express your feelings
  • Laugh, when all else fails, laughter is the best medicine

And most important:

  • Communicate (verbal, written, signing or technology)

You do not have to face dementia alone. Talk to someone: your caregiver, family, doctor, a trusted friend, minister, healthcare professional, call the First Link Dementia Helpline at 1-800-936-6033.

Do not go through this journey alone. Do not surrender to dementia; don’t be the person with dementia but rather the person with dementia.





Dementia and concussion

What you need to know about concussion and the risk of developing dementia

Football players, soccer players, ice hockey players and soldiers have one thing in common.

They are all at increased risk of experiencing repeated concussions, also called traumatic brain injury, and consequently, have an increased risk of developing dementia, early onset Alzheimer’s disease or chronic traumatic encephalopathy (CTE).

For decades, it was generally accepted that most boxers develop punch-drunk syndrome or boxer’s syndrome (dementia pugilistica) because of the number of blows to the head (concussions) they sustained in the ring.

However, little thought was given to the long-term effect of concussions on other athletes until 2005 when a neuropathologist, Dr. Bennet Omalu revealed that NFL players were at increased risk of developing CTE.

Despite attempts to downplay the significance of Omalu’s research, in 2007, two significant events occurred:

  • A post-mortem test was performed on the brain of Justin Strzelczyk, a 36-year-old NFL player who had died three years previously in a high-speed police chase. Analysis of his brain tissue revealed significant brain damage likened to severe dementia.
  • Canadian wrestler Chris Benoit, 40, committed suicide after killing his wife and son. For years, he had experienced depression and anger problems. An autopsy found that his brain was so severely damaged that it was comparable to the brain of an 85-year-old man with severe Alzheimer’s disease.

Both men had sustained multiple blows and hits to the head (concussions) throughout their professional careers; both men had chronic traumatic encephalopathy (CTE).

Unfortunately, CTE is not limited to professional contact sports; it can also affect anyone involved in any sport where a concussion can occur. The youngest person reported to have CTE is 17-year-old Nathan Stiles who died after sustaining a concussion at his high school homecoming football game.  

Throughout high school, he experienced multiple concussions, but as there was no post concussion protocol implemented at the school, he never took a sick day and continued to play, year after year, hit after hit, until that fateful day in October 2010.

His autopsy revealed he had CTE.

What you need to know about concussion:

  • It can affect anyone, at any age, at any any time, anywhere
  • It can knock a person unconscious, cause memory loss, nausea and vomiting, headaches, dizziness and ringing in the ears. It can also impair one’s ability to think and speak clearly
  • It occurs when a person experiences a blow to the head, or the head shifts too suddenly, causing the brain to move through the cerebral fluid (CSF) and hit the inside of the skull with force
  • Falls and motor vehicle accidents are the most common cause
  • It is rarely detected on x-rays or MRI
  • It often results in post-concussion syndrome: anxiety, headaches, dizziness, memory lapses, difficulty sleeping and concentrating and can last up to six months
  •  If a second concussion occurs within minutes/days/weeks after initial concussion, second impact syndrome occurs where the brain and its arteries swell dangerously resulting in death

Concussion is graded level 1, mild; 2, moderate; and 3 severe:

Grade 1, mild: 

Temporary disorientation, blurred vision, possible nausea and vomiting without unconsciousness. Symptoms disappear within 15-30 minutes. Medical attention is not usually required, unless symptoms worsen. If you have sustained multiple grade 1 concussions, medical assessment is recommended.

Grade 2 moderate:

As above, except symptoms can last from 30 minutes to 24 hours. Twenty-four hour observation in hospital/home is recommended.

Grade 3 severe:

The classic concussion. It is the most serious with loss of consciousness lasting mere seconds to five minutes. Immediate medical attention is required

How to reduce your risk of concussion:

  • Wear a seatbelt
  • Wear a helmet when skiing, cycling, skateboarding
  • Ensure environment is well lit and free of tripping/slipping hazards
  • Wear correct footwear
  • If playing a contact sport, wear protective headgear/equipment and follow designated concussion protocol

Besides all the obvious dangers of concussions, increasing evidence shows that repeated concussions can lead to early onset dementia. With three or more concussions, the risk of early onset Alzheimer’s disease or CTE increases five-fold.

Chronic traumatic encephalopathy (CTE) is a progressive degenerative disease of the brain usually caused by a history of repetitive brain trauma, e.g. concussions. Trauma to the brain can cause a build up of an abnormal protein called tau which slowly kills healthy brain cells, the neurons (see 5 common dementias).

The most common signs of CTE are mood and behavioural changes, memory loss, slurred speech, parkinsonism and gait impairment, and impairment of executive dysfunction (planning, thinking, behaviour control) (concussionfoundation.org).

Effects of concussion on the person with dementia:

People with dementia are at increased risk of falling and/or hitting their head, which frequently result in concussion and an increased risk of developing a brain bleed (subdural hematoma). Of note, people with dementia who are taking anticoagulants (Warfarin) are at increased risk of a brain bleed after sustaining any blow to the head.  

A subdural hematoma occurs when blood vessels burst in the space between the brain and the dura mater, the outer layer that covers the brain. The bleeding forms a hematoma, which put pressure on the brain tissue and the person with dementia may experience:

  • Headache
  • Vomiting
  • Drowsiness and dizziness
  • Increased confusion
  • Increased blood pressure
  • Weakness on one side of body
  • Unequal pupils
  • Slurred speech
  • Seizure
  • Unconsciousness

There is no evidence that a single concussion increases risk of dementia and similarly, not everyone with a history of repeated concussions will develop early onset Alzheimer’s or CTE. However, the more injuries to the head one experiences, the more susceptible that person is to develop some form of dementia.

Therefore, promoting and ensuring safe brain health should be high on everyone’s list: young and old.



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