What does it mean to be a person with dementia?

Transcription

1 The New Culture of Dementia Care: Personhood and the Family Susan Frick, MSW Rush Alzheimer s Disease Center susan_frick@rush.edu What does it mean to be a person with dementia? As staff we must develop empathy- an understanding of what life might be like for the person with dementia 1

2 Common Changes of Alzheimer s Memory Attention Language Judgment Perception Orientation Mood Behaviors The Experience of Alzheimer s Anxious Frustrated Loneliness Powerless Loss of purpose Outpaced Incompetent This is exactly it, I m just left alone in the corner. Person with AD 2

3 The Experience of Alzheimer s Change in Self-Esteem Depression Loss of independence Loss of identity Loss of purpose Loss of relationships The Experience of a Family Member Might take time to recognize the changes Increase in frustration Not sure when to provide assistance Changes family dynamics and roles 3

4 The Experience of Alzheimer s Living with Alzheimer s disease Blue Skies 1995 Painted by William Utermohlen at the time of his diagnosis of Alzheimer s Disease He continued to paint/draw until 2002 He passed away in

5 Living with Alzheimer s disease The work of William Utermohlen Living with Alzheimer s disease 1999 a last oil painting The work of William Uterhohlen a final drawing 5

6 Alzheimer s is Isolating People with Alzheimer s talk about feeling alone and different because of the disease because of the world around them Our job is to make the world around them a supportive community The Importance of Community Everyday you have the chance to create community I love coming here because we are all in the same boat Ron Sidebottom Without Warning member with AD Painted by Rev Shawna Bowman based on conversation from a Without Warning meeting 6

7 How Do We Make Community Valuing people and those who care for them Treating people as individuals Looking at the world from the perspective of the person Providing a positive social environment in which the person can experience wellbeing Dawn Brooker, Ph.D. Bradford Dementia Group, University of Bradford Maintaining Personhood Attachment Identity LOVE Comfort Occupation Inclusion Tom Kitwood, Dementia Reconsidered, The Person Comes First 7

8 Effective Approaches Set up the person to be successful Allow the person to have control Provide routine Provide genuine affection Slow down Watch body language Effective Approaches Be honest and sensitive to the reality of the person Use simple, concise language Listen to and value the person Encourage abilities Develop relationship Be present 8

9 Supporting the Person and Family Educate Support Help to adjust to changes Connect with others who are experiencing similar issues Allow to grieve Supporting the Person and Family 9

10 Dementia Care Tom Kitwood called dementia care - The richest area of human work Requiring staff who have a high level of ability, creativity, insight Dementia Care Bob person with Alzheimer s Disease I want to live with Alzheimer s disease with grace. Our job becomes allowing and encouraging that grace to happen 10