The Lived Experience of Dementia: Caregivers

 Family caregivers and professional caregivers

 Family caregivers
o Change can occur after spending a lifetime together
o Caring partner often feels they have lost the person
o Family care may be embarrassing for the partners and for family caregivers
o Physical needs are distressing to deal with
 Prompting
o Many relationship difficulties arise directly from the cognitive changes that
occur in people with dementia
o Working memory and executive function problems mean that people with
dementia typically require a great deal of prompting from their caregivers
o Constant need for reassurance and clarification of information, answering
questions
o ZARIT & EDWARDS 1999 – caring for an older relative has been identified as
one of the single most stressful events a person can experience
o Can impact the caregivers’ health
o Renzetti et al (2001) found that female caregivers contending with disturbed
behaviour were most prone to stress
o BPSD
 Actions on behalf of people with dementia that are supposed to be
symptoms of dementia
 Ward et al. 2003
 Stokes 2000
 Ambiguous loss
o Peer support
o Carer depression increases with anticipatory grief
 Do you face resistance from residents when transitioning to the later stage care?
o Trouble cooking
o No time for activities
 How is 24 hour care?!
 Fatigue
 No time to eat and drink
 Injuries
 Do you face difficulty from families?
 Professional caregivers
o Developing caregiving relationships is difficult
o Communication become limited to those that occur during basic activities of
daily living (Bowie and Mountain, 1993)
o Some people may not be able to understand that there can be a good level of
communication
 Terror Management Theory (TMT)
o People don’t want to consider their own mortality
 Suppress thoughts about mortality (McKenzie 2016)
 Attachment theory and burnout
 Job satisfaction
o Main reason people leave is lack of job satisfaction