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Leslie Pedtke, LNHA, King Management Company
Partnering with Family Members in the Care of Their Loved Ones with Dementia Leslie Pedtke, LNHA, King Management Company
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Understanding Behavior
“When you remember me, it means that you have carried something of who I am with you, that I have left some mark of who I am on who you are…For as long as you remember me, I am never entirely lost. When I’m feeling most ghost-like, it is your remembering me that helps remind me that I actually exist.” – Frederick Buechner Understanding Behavior
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Common signs of Dementia
Memory loss Difficulty planning and carrying out tasks Language problems Decreased ability to concentrate Visual, spatial and perception problems Difficulty with complex tasks and learning new concepts Personality changes
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50-80% of individuals with moderate and severe symptoms of dementia display clinically significant behavior problems. 64-83% of those in US nursing homes exhibit behavior problems Up to 90% of behaviors may be triggered by the caregiver approach or something added to or missing from the social and/or physical environment. Statistics
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Behavior is communication
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Progressively Lowered Stress Threshold
Triggering Event Something happens to cause the individual stress. Inability to cope with stress Stress threshold is lower for a person with dementia than those without cognitive deficits. Catastrophic Reaction Stress flips into a catastrophic event.
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Caregiver communication
Common Triggers Physical Emotional Environmental Task-related Caregiver communication
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When a behavior occurs ask yourself the following questions:
When did it happen? Where did it happen? What happened leading up to the behavior? Who was involved? How often has this occurred? Is it becoming a pattern?
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Be proactive Focus on a familiar skill or task
Repeat instructions as needed Break tasks down into simple steps Demonstrate as needed Limit distractions Recognize triggers of the normal flow of a person’s day
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Use good communication skills
Choose wisely your words Tone of your voice Body language Approach Eye contact Sound level of your voice
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Communication Do’s and Don’ts
Listen carefully Argue, confront or correct Help a person fill in the blanks Give orders or make demands Read facial expressions Talk down to a person Give compliments Talk about a person as if they aren’t there As open ended questions Try to explain or prepare in advance Give generous praise Take negative comments seriously Enjoy the person in every possible way Be insincere, asking questions when you are in fact not giving a choice
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Greetings and Magic Phrases
“I need your advice.” “I need your help.” “I’m sorry.” “I was wondering…” “Isn’t that always the way.” “I’ve come to see how you are.” “I’m so glad to see you!” “Seeing your face really brightens my day!” “What a warm smile you have!” “I’ve come to see you. I hope this is a good time.”
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Compliments and Encouragement
“I’d like to invite you to…” “While I’m here may I help you…” “Could you give me a hand with…” “It would mean a lot to me if you would join me…” “Could we do this together?” “You have the magic touch!” “I have always loved that color on you.” “I really enjoy talking to you. You always make me feel better.” “Seeing you is the best part of my day.” “Well done!” or “Way to go!”
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Behavioral and Psychiatric Symptoms of Alzheimer’s Disease
Sleep disturbances Physical and verbal outbursts Emotional distress Restlessness, pacing, repetitive actions Delusions (firmly held beliefs in things that are not real) Hallucinations (seeing, hearing, or feeling things that are not there. Behavioral and Psychiatric Symptoms of Alzheimer’s Disease
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Wandering People with dementia walk, seemingly aimlessly for a variety of reasons:
Make time for regular exercise. Recognize a person’s need for wandering. Bathroom Hungry Boredom Tired Anxiousness (pacing) Pain Trigger of the day
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Paranoia If a person suspects money is missing, support their need to have money on them by providing a small amounts of money in their pocket for inspection. Offer support by helping them look for the missing object. Validate their feelings by saying things like, “I’m sorry this is missing. I know how much it means to you.” Try non-verbal reassurances like a gentle touch or hug. Remember what the person is experiencing is very real to them.
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Repetitive Speech or Actions
Provide plenty of reassurance and comfort Try distracting with food and drink or movement Never remind them they just asked that same question Learn to recognize certain actions. An agitated state or pulling at clothing, for example, could mean the need to use the bathroom. People will often repeat a word, statement, question or activity over and over.
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Agitation and anxiety Reduce caffeine intake, sugar, and junk food
Reduce noise and clutter Maintain a certain structure of the day by keeping to routines. Try gentle touch, soothing music, reading or walks. Support independence as much as possible. Agitation refers to a range of actions including irritability, sleeplessness, and aggression. Remember what caused a person anxiety before their diagnosis of dementia. What is their life story?
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Eating and Nutrition Meals are a social event, they shouldn’t be viewed as a task. Involve the person in meal choices and prep if possible. Eating independently should take precedence over eating neatly. Sit down and eat with the person. It is important to ensure that the person is eating enough nutritious food and drinking enough fluids.
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Bathing Adopt past bathing routines as much as possible Respect modesty Be mindful of the environment and safety.. Never leave a person with dementia unattended in the bath or shower. If hair washing is a struggle use dry shampoo. Remember there are alternatives to getting clean that don’t have to include a shower or bath. People with dementia often have difficulty remembering good hygiene.
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Family perspective: Feelings of grief and loss of control
Denial Convincing themselves that the person has not changed Attempting to normalize problematic behaviors Anger Being frustrated with the person or the caregiver Resenting family members that cannot or will not help. Feeling abandoned Guilt Having unrealistic expectations Feelings that somehow they failed Sadness Feeling overwhelmed by loss Withholding or displaying emotions more than usual Acceptance Learning to live in the moment Asking for and accepting help from others Family perspective: Feelings of grief and loss of control Dementia gradually takes away the person they know and love. As this happens, the family may experience the different phases of grieving.
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Just be with me… Tips for a meaningful visit for Person’s Living with Memory Loss
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Approach warmly and speak in soothing tones.
Be in the moment. Don’t dwell on what was or how things will be tomorrow. Approach warmly and speak in soothing tones. Speak directly to the person. Don’t worry if comments don’t make sense or aren’t entirely accurate. Use art as a tool to communicate. Read to the person. Give a hand or foot massage. Lay or sit next to the person and just hold hands. Sometimes the best times are just sharing space with those we love. Utilize the senses. Smells and sounds bring back memories. Practice empathy and validation. Be willing to try something different on each visit.
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Thank you Leslie Pedtke
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