Interacting with Peoplewith Dementia:Meeting Person to Person-Effective Communication Strategies : Interacting with Peoplewith Dementia:Meeting Person to Person-Effective Communication Strategies Dr. Elisabeth Drance
Alzheimer Society of BC,
Tele-workshop
April 22, 2009
Slide 2 :
Slide 3 :
Slide 4 : Elisabeth Drance, MD, FRCPC Medical Director – Older Adult Program
Vancouver Community Mental Health Clinical Associate Professor, Department of Psychiatry, UBC Centre for Research on Personhood in Dementia University of British Columbia Guest Presenter
Slide 5 : “The kind of vibrant person you knew is still there – but not the same person anymore”
“I’m the same person, only different”
Slide 6 : Every person with dementia, regardless of where they are on the dementia pathway, maintains a core of self that can be reached. Alzheimer Society of B.C.
Learning Objectives : Learning Objectives You will be challenged to:
Examine societal attitudes toward dementia and the effect of these attitudes have on our approach to care and interaction with the person.
Distinguish between the traditional model of “managing dementia” and a method of caring for people based on a person-centered approach.
Care for people living with dementia in a way that honours their personhood & promotes their well-being.
You will also learn some practical person-centered strategies for interacting and communicating with the person with dementia.
Slide 8 : How do we, as North American society, look at and treat people living with dementia?
How do these views influence the care and support experienced by people living with dementia? Table Ponder….
The prevailing public view : The prevailing public view Dementia is a “death that leaves the body behind”.
“Demented people” are unable to make decisions so better to talk to their family member.
“Demented people” are on a hopeless one-way journey that will leave them a shell of what they were.
We start talking with pity and sadness.
Slide 10 : “What I don’t like is when somebody comes in and doesn’t listen to what I’m saying, doesn’t validate anything I say because now they think that because I have Alzheimer’s that I am no longer able to form judgments or to have opinions.”
What is your own personal narrative of “dementia”? : What is your own personal narrative of “dementia”?
Slide 12 : How does it shape your approach to caring for people living with dementia?
What do people living with dementia say is important in relating with their family caregiver or working with their health care team? : What do people living with dementia say is important in relating with their family caregiver or working with their health care team?
The quality of the relationship makes all the difference. : The quality of the relationship makes all the difference. They need:
To be treated with respect – at all times,
To feel others are really trying to understand them,
To feel that people are taking the time to really listen to them,
To not be treated and judged as if they are stupid,
To be shown compassion and love.
Slide 15 : “Whoever walks through that door in the morning, that’s what decides the kind of day I am going to have. For better or worse, it depends on how people treat me.”
The standard/traditional way of understanding dementia : The standard/traditional way of understanding dementia Alzheimer’s disease is a physical condition. The mental and emotional symptoms are a direct result of a set of progressive changes in the brain that lead to the death of brain cells. This degeneration is irreversible.
Purpose of understanding dementia in this way : Purpose of understanding dementia in this way To challenge the notion that Dementia is a normal part of aging
Dementia is a disease that needs research and treatments
Dementia relates to neurological change within the brain’s structure
Understanding that dementia a terminal disease ie. guides our understanding of its progression
How can we improve on the standard/traditional way of understanding dementia? : How can we improve on the standard/traditional way of understanding dementia? Personhood-Centered Dementia Care
Thomas Kitwood
University of Bradford
England
Thomas Kitwood’s critique of the standard paradigm : Thomas Kitwood’s critique of the standard paradigm “A person who has dementia is involved in two kinds of change, going on side by side…
First there is the gradually advancing failure of mental powers such as memory, reasoning and comprehension…
Second there are changes in the social-psychological environment – in patterns of relationship and interaction.”
Kitwood suggested: : Kitwood suggested: “There can be no doubt…that the dementing process, as it actually occurs, is a consequence of them both.”
“We have been very devoted to the first kind of change, while subjecting the second to almost total neglect.”
How do you view the person with dementia? : How do you view the person with dementia? PERSON with dementia
vs
Person with DEMENTIA
Kitwood, 1997
Multiple Factors Affect the Dementia Experience : Multiple Factors Affect the Dementia Experience 1. Neurological disease
2. Health – physical and mental
3. Personality
4. Life Experiences
5. Physical environment
6. Social environment
7. Cultural meaning
(Kitwood, 1989, 1990; Marshall, 1999; Post, 2000)
Kitwood’s premise for well-being in dementia : Kitwood’s premise for well-being in dementia A healthy social environment is key to living successfully with dementia & can potentially influence course of illness
Unhealthy relationships can have significant effects on the functioning and well-being of the person with dementia
Personhood : Personhood “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect, and trust”
Non-Supportive Social Environment: : Non-Supportive Social Environment: disempowerment
infantilization
intimidation
Labelling*
stigmatisation
outpacing
invalidation
banishment objectification
ignoring
imposition
withholding
accusation
disruption
mockery
disparagement
Kitwood, 1997
Possible Feelings When A PersonDoes Not Feel Understood or Does Not Understand. : Possible Feelings When A PersonDoes Not Feel Understood or Does Not Understand. anger
frustration
sadness alienation
fear
loneliness
grief 26 Alzheimer Society of B.C.
Slide 27 : Aspects to be aware of
in the person’s environment Physical:
medication
acute illness
chronic illness
dehydration
constipation
depression
fatigue Location:
too big
too small
too cluttered
no cues
glare
harsh colours/patterns
unfamiliar Alzheimer Society of B.C.
Slide 28 : When, Where, Who, What and Why?
time of day?
reaction to an individual?
too complicated
too many steps
unfamiliar Other aspects to be aware of
in the person’s environment Alzheimer Society of B.C.
Supportive Social Environment: Positive Person Work : Supportive Social Environment: Positive Person Work celebrates
negotiates
plays
recognises
collaborates
uses all the senses relaxes
validates
facilitates
creates
gives
holds
Kitwood, 1997.
Slide 30 : “Activity of some kind whether it is work or play is, to most people, synonymous with living. It is the way each person defines himself and his role in society and exerts control over the world around him.”
— Doing Things by Jitka Zgola Alzheimer Society of B.C.
Activities : Activities remember the past together
photo albums may bring memories
meaningful connections
career
family
interests
favourite people
pets 31 Alzheimer Society of B.C.
Activities:for Quiet time : Activities:for Quiet time Sharing the stillness is communicating.
listening to music
holding hands
just sitting together 32 Alzheimer Society of B.C.
Activities:for Stress Reduction : Activities:for Stress Reduction dancing
interesting things to look at and hold
soothing music
aromatherapy outdoor walks
simple gardening activities
indoor activities connected to past life 33 Alzheimer Society of B.C.
Slide 34 : By adapting the environment and the way we communicate, lowering our own stress, and engaging the person with dementia in meaningful activities we can lower the person’s stress, and enable the person with dementia to function at their optimum level.
Slide 35 : Grief is an inevitable part of the journey.
Balancing grief and finding joy in the moment is the key to wellbeing for you and the person with dementia.
As a family member : As a family member Make sure we only do for the person what they “need” us to do for them
Information is power – give it to the person with dementia as he/she can handle it.
Try not to “take over”, but rather “partner with”…whenever possible
Working with the Person with Dementia : Working with the Person with Dementia What’s important to them right now?
Move at their pace as much as possible with information disclosure – avoids outpacing
Make sure to check in with your family doctor regularly – for encouragement, grief counselling, information, and monitoring – avoids perception of “banishment”, “abandonment”, “invalidation”
Connect with supports when it’s right – remember you can’t do it all alone.
Help them to focus on what they CAN do and what is meaningful for them and encourage them to keep doing it. - empowerment
Slide 38 : “I feel fine until I go out into the world and then I notice how slow I have become. I feel as though I can’t keep up”
“I had to find a way to live on with this horrible disease. It wasn’t going to take away everything I had.”
Additional issues for you as family members… : Additional issues for you as family members… Balancing Grief Support & Living in the Moment
Building Network of Care – formal & informal
Community connections
Understand, and help others understand the importance of a positive personhood approach to their loved one – work to understand the power of attitude
Person Centered Caring and the Middle Part of the Journey : Person Centered Caring and the Middle Part of the Journey Keep vigilant regarding medical, psychiatric, and social causes of “excess disability”.
Help your loved one to stay engaged in things they love by helping to be a bridge across the “disability gully”
Encourage reminiscence
recording important events in their lives – scrap booking, stories, powerpoint shows (label the photos!)
Useful reminiscence tool & useful in later stages of illness
Review care decisions with the person with dementia, and other family members involved in their wellbeing, to address care throughout the progression of the illness.
Slide 41 : “I’m going to be here right here in the present. No more thinking ahead…I don’t think about dying anymore. I think about living.”
“I never painted before, I love it. It helps me pass the day.”
Supporting Personhood in Late-stage Dementia : Supporting Personhood in Late-stage Dementia Nothing about me without me….talk to me not over me!
Keep their story alive for all involved in their care.
Individualized, personhood-honouring care is the best chance of minimizing the Behavioural & Psychological symptoms of dementia
We need to recognize when we are entering the palliative phase of the dementia.
Keep focused on dealing with excess disability.
Fighting the Stigma of dementia is everybody’s responsibility. : Fighting the Stigma of dementia is everybody’s responsibility. To do that, we have to model the attitudes we believe make a difference to people living with dementia & advocate for their needs…in a society that has yet to really “get it”.
Slide 44 : Summary The diagnosis of dementia is a challenging one.
The stigma associated with the diagnosis pervades every facet of life for the person with the illness.
We need to examine our own attitudes toward the illness, and the person with the illness.
How we think about dementia, and how we relate to people with dementia may influence the course of their disease.
We need to know the tasks of each phase of the illness.
As a team – the person with dementia, family, and professionals, we need to care for each other as we take this journey together…
Slide 45 : - Talking to Alzheimer's
by Claudia Strauss - Doing Things
by Jitka Zgola Suggested Reading: Alzheimer Society of B.C. - Dementia Reconsidered; the Person Comes First
by Tom Kitwood
Alzheimer Society of B.C. : Alzheimer Society of B.C. 46 Mission:
The Alzheimer Society of B.C. exists to alleviate the personal and social consequences of Alzheimer’s disease and related dementias, to promote public awareness and to search for causes and cures. Alzheimer Society of B.C.
Alzheimer Society of B.C.Programs & Services : Alzheimer Society of B.C.Programs & Services 47 Support Groups
for caregivers and people in the
early stages of dementia
Newsletters
In Touch for caregivers
Insight for and by people with dementia
Healthy Brain
Information Services
Memory Bank
www.thememorybank.ca Safely Home/B.C. Photo Registry
Shaping the Journey
for people with early stage dementia
Dementia Series
Dementia Helpline
1-800-936-6033
Website www.alzheimerbc.org Alzheimer Society of B.C.
Alzheimer Society of B.C. : Alzheimer Society of B.C. Commitment to supporting research 48 Alzheimer Society of B.C.
Alzheimer Society of B.C. : Alzheimer Society of B.C. Dementia Helpline
1-800-936-6033
Website www.alzheimerbc.org
Alzheimer Society of B.C. : Thank You Alzheimer Society of B.C.