Coping with the diagnosis

An informative seminar for families who are struggling with a loved one’s Alzheimer’s or related dementia

Created by: Amanda Kanners

The Guide to Coping with Alzheimer’s & dementia

What are the types of dementia?What are the stages of Alzheimer’s disease? Is dementia genetically inherited?How do I talk to them about their diagnosis?Why is “no” their new favorite word and how can I turn it

into a yes?Who should they spend time with?How do I deal with delusions and hallucinations?How should I manage wandering?How can I help someone in late stage dementia?

?? ?

An accurate diagnosis is key

Knowledge of the proper diagnosis can help family members better understand and cope with their

situation.

Photo by: 45th Ward Mom (c) 2014 Photo by: Anglicanmainstream.net

First off… what is dementia?“Dementia is an umbrella term for any disease or disorder that will cause problems with brain functioning such as confusion, memory loss, or loss of problem solving ability.” (Home Instead, 2014)

Dement ia

Alzheimer’s

FrontotemporalLewy Body

VascularMixed

Alzheimer’s DiseaseMost common type of

dementia Symptoms develop

slowly, getting worse over time

Early-stage symptoms Later-stage symptoms

Vascular dementia

Second most common type of dementia

Different causes than Alzheimer’s Disease

Different onset of symptoms than Alzheimer’s Disease

Mixed dementiaUnknown prevalence More than one type of

dementia occur at the same time in the brain

Causes and symptoms depend on the types of dementia that are occurring simultaneously

Most common combination of Mixed dementia

Dementia with Lewy Bodies

Third most common type of dementia Cause currently unknown

Common symptoms

Photo from: Huffpost Healthy Living

Frontotemporal dementiaMost common

type of dementia in individuals under the age of 65

Early onsetVery different

early-stage symptoms

Family historyPhoto from: frontemporaldementia.info

What are the stages of Alzheimer’s disease?

Photo from Net Resources International

Is dementia inherited? Don’t panic! Not all types of dementia are genetic, other

factors can actually be greater contributors.

Early-onset dementia is more inheritable

Later-onset dementia is less inheritable

Photo from colormerouge.com

“Whatever you do, don’t tell mom about her Alzheimer’s

disease!”Most physicians and specialists believe it is a

patient’s right to be fully informed about their situation.

Photo from natcom.org

Ok… so how do I talk to them about their

diagnosis?1. Research the type of dementia they have been

diagnosed with.2. Allow the physician to explain the situation to

your loved one. They are trained for this and have most likely done it many times.

3. Be empathetic, upbeat, and supportive.4. Answer any questions your loved one asks, but

stress the positive5. Assure them that you will be traveling the

journey with them.

How can I turn a NOinto a YES?

When we are asked to do something we don’t understand or we don’t feel comfortable with, how do

we respond? NO

NO! No!

NO!NO!

YES!Photo from karengately.wordpress.com

Third time’s the charmTry three times in three different ways

1. Ask them in the same way that you have always asked them.“Dad, it is a beautiful day outside. Let’s go outside and watch the birds.”

2. Use some information from their life story to make a more personal request. “Dad, let’s go outside and feed the birds. I need you to help me fill your bird feeder, and I know you are the best at it!”

3. Take their hand and use visual cues. Add an incentive or a favorite reward to increase likelihood of a yes.“Dad, it is really beautiful outside today. Let’s go outside and bird watch. [pause] I’d really appreciate your help, and afterwards we can go get some chocolate ice cream.”

Coping Together“We want to be with other people who

have the disease, people like us.” (Chicago Tribune, 2014.)

Supper clubs, Wild Bunch, and other support groups.

Members of the Wild

Bunch, formed in 2010.

Photo from the Chicago Tribune

Delusional, suspicious and hallucinating

Delusions: firmly held beliefs in things that are not actually real. Although their delusions are not grounded in reality, the situations are very real to the person with dementia.

Suspicions: can stem from delusions and cause mistrust in those around them. This often leads to accusations of theft, infidelity or other types of improper behavior.

Hallucinations: the person with dementia may see, hear, smell, taste or feel something that is not actually there. These are false perceptions of objects or events that do really exist involving the senses.

Photos from Alzheimer’s Association

“The cleaning lady stole my wallet”Accusations Forgetfulness

“I don’t know who you are” Mistaken Identity Forgetfulness“I just had my 35th birthday last week”

Flashbacks Forgetfulness“My neighbor keeps stealing my petunias”And then some are just mysterious…

How do I react?Do not take it personally!

Follow these tips:Do not overreact or get upset at your family member. Acknowledge their concern and ask questions to gain

more information about the concern.Do not argue. Remember that this is their reality.With mistaken identity you can try offering gentle

cues.Time heals all. Hallucinations are a slightly different story.

Where did she wander to now?

“I just turned my back for a minute and mom had wandered off. She usually walks so slowly, but when she

wanted to get away she became a track star!” (Home Instead Inc., 2014)

6 in 10 persons with dementia wander… Why?

Forgetfulness“What time is it? Am I missing work?”

Fear“Where am I? This place isn’t safe.”

How can I keep them safe?

Make your home safe.

Recognize patterns and triggers.

Know your loved one’s wandering habits and plan outings based on them.

Always plan for the worst.

Consider registering your loved one with MedicAlert +

Safe Return

How can I help my loved one who is in a later

stage?Always preserve your

loved one’s dignityGentle physical contactTake care of yourself

Manage painSpend time outside

when possible Hospice care

Photo from Bath-Knight Blog

Stimulate the sensesEngaging the senses engages the brain

and keeps your loved one roused

Taste: hydration, foodVision: nature scenesHearing: soft music

Touch: animal therapy, warm towels, soft massage Smell: aroma therapy

Photo from newyorktimes.com

Photo from inherchucks.com

References:Alzheimer’s Association. (2014). Seven stages of Alzheimer’s. Retrieved on January 28, 2014 from: http://www.alz.org/alzheimers_disease_stages_of_

alzheimers.asp

Graham, J. (2014). Alzheimer’s supper club. Chicago Tribune: Health & Family. Printed on Wednesday, January 29, 2014. (Print).

HCR ManorCare. (2014). Arden Courts. Retrieved on February 3, 2014 from: http://www.arden-courts.com

Home Instead Inc. (2014). Retrieved on January 28, 2014 from: http://www.helpforalzheimers families.com

Net Resources International. (2012). What are the stages of Alzheimer’s? Retrieved on January 29, 2014 from: http://www.drugdevelopment-

technology.com/projects/semagacestat/semagacestat2.html

Photo references:45th Ward MomAlzheimer’s AssociationAnglican Mainstream Bath-Knight BlogChicago TribuneClip ArtCNN HealthColor Me Rouge

Frontotemporal Dementia.infoHuffpost Healthy LivingIn Her Chucks Karen Gately WordpressNational Communication AssociationNet Resources International New York Times