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Transitions that Middle-aged & Older Adults with Down syndrome
and their Families Encounter
Nancy Jokinen, MSW, PhDUniversity of Northern British Columbia
National Down Syndrome Society, Seattle WA, June 27, 2015
Overview of presentationDraw on select research, literature….1. Background Context 2. Transitions
Moving from the parental / family homeChanges in serviceOnset & progression of dementia
Before we begin…Social Work perspectiveUnderlying beliefs:• Aging demographics – impact on social, political, and economic life• Family relations - important - vary & change across the lifespan• Supports & changes in support - impact – positive or negative
• Individual, family members & family as a whole.• Services - need to prepare for an aging clientele
• Support perceived as timely & appropriate that meets both individual and family needs
1. Background Context• Growing body of literature on family caregiving
Little known about periods of transitions & older adults (Lowenstein et al, 2012; Jokinen, et al 2012)
• Adults aging with Down syndrome – focus on health / Alzheimer’s disease
• Little evidence about adults with intellectual disabilities living alone / residing with family (Amado, et al 2013)
Background Context
Quality of Life• Choice & self-determination - sense of control over one’s life
• Issues appear accentuated in older aged populations (Jokinen, 2014)
• Reciprocal relationships (Lowenstein et al, 2012)
Background Context – individuals with Down syndrome & their families
What parents were told following the birth of their son / daughter• Negative views - Down syndrome and other intellectual disabilities“Well I know when he was born the nurse said he would never speak and would never walk and that was the worse part.” (Jokinen, 2008)
Traditionally - Institutionalization – a lack of community services “I was one of the parents, when my daughter was born, we were told to put her in an institution.” (Jokinen, 2008)
Grass roots movements - young families of the time – pioneers “We had to make the path, we had nothing to follow.” (Jokinen, 2008)
Transitions are inevitable• Essentially a movement through life stages or events • Change – level of insecurity • Requiring individuals to adjust - cope (Golan, 1981, as cited in Ray, Bernard, & Phillips, 2009, p. 99)
• For older aged people - often prompted by events such asRetirement, relocation, death of friends/family, or the onset of a
chronic medical condition….Potential to disrupt long established routines, familial support &
social networks
Transitions & adults with intellectual disabilities • Adults with Down syndrome – 50’s – significant # of life events
compared to other adults with ID• Environmental changes, losses/separations, & medical events (Patti, Amble, & Flory, 2005)
• Planning – to manage transitions over the life course• Australian study - Particularly in regards to housing (Shaw, et al, 2011)
• Life events – risk factor for psychological problems• Longitudinal study of persons with ID in UK (Hubert-Williams, et al., 2014)
2. Transitions
PLANNED DEMAND• Proactive• Prepared• Supports in place• Some glitches - compromise• More positive outcomes
• Reactive• Occur suddenly – unexpected • Unprepared, rushed• Hostage to what is available and
can be arranged • Adverse outcomes
(Jokinen, et al 2012)
Parents and adults with Down SyndromeLiving Separately
• Past opportunity • Concerns about the future• Planned• Services available• Families remain involved• Transition of familial support
• Dan & George’s story• A change can interrupt plans
Parents and adults with Down SyndromeContinue to live together – various reasons
Future plans• Sibling involvement
Mrs. L’s story
Future uncertain – no plans• Health?• Wait lists / available service?• Sibling? • Mrs. S’s story
Moving from the parental / family home
• Relocation – moving homes for any older adult is a challenge• Where to live? • Packing up & moving:
What possessions to bring / dispose of Settling in to the new location Disruption of established routines Maintaining social networks / establishing new ones
For many – preference to
“Age in place”- Maintain current situation for as long as possible • Remain in a familiar home & community • Maintain contact with family & friends • Keep personal possessions (Chappel, 2001; Jokinen, 2008)
Aging in place – at home…
Requires thoughtful planning….• Housing
• affordable, age-friendly• Community services • Healthcare
• Appropriate, timely • Local businesses• Financial resources (Chappel, nd)
Appropriate for All People?Under all circumstances?• In theory, concept embraced
Pathways to Alternatives• Eligibility & Access • Demands on system
What’s the best? What’s possible? – Given:• History of institutionalization • Increased demands - on family & services• Individualized residential arrangements• Small group living arrangements• Proactive planning – by families / services
• Range of options - Individual needs / preference
• Long histories with various services & supports – spanning decades
Transitions – not well understood
• Changes in service may occur – initiated by• The service agency • or by external forces (e.g., funding) (Hulbert-Williams & Hastings, 2008)
Changes in service
Staff changes
“…their whole lives are up and down.... different people working with them coming into their lives for a short time and going.” (Jokinen, 2008)
• Emotional attachment• Limited understanding of why change in staff occurs • Some try to maintain contact following a change
Staff changes
Multiple staff changeovers in the service - acknowledged• New staff – learning curve• Loss of knowledge about the person / family involvement• Impact family relations with the service
Who to contact about what Retelling history…. (Jokinen, et al 2012)
“You know we’ve had 10 or 11 [supervisors] from the time that house opened... and I said [to the agency] I don’t know who I’m supposed to call… half the time I never even met the [supervisor]” (Jokinen,2008).
• Family - a constant presence
Moving / relocation within residential service
• Another service change that can occur • a major life event with potential for adverse outcomes
• Some considerations • Agency owned property / rental• Upkeep of premises• Funding • Interpersonal relations with housemates• Changes in health – prompting relocation
• Agency polices on residential moves?
Moving / relocation within residential service
To minimize & provide long term securing• Some parents purchased homes• Pros / cons
• Financial ability• Dual role – landlord & family• Negotiations – who will live there, support….. (Jokinen, 2008; Jokinen, et al 2012
• Wait lists for residential service – common• Placing greater burden on families
Alzheimer’s disease & other dementias• Progressive, debilitating disease
• Affects daily functioning, thoughts, decision-making • Initial symptoms are subtle
• Become more evident over time• Overlooked / dismissed• Increasing difficulty with familiar tasks• Loss of interest • Changes in personality
For all people affected by dementia
Many transitions• Changing abilities → loss of abilities • Independence → dependence • Relocation?
• At some point person living alone, will need to move• Ability of others living with / supporting - to cope?
• Staff / service changes?
Issues for adults with Down syndrome & their families• Increased risk – awareness• Availability of trained professionals• Diagnostic overshadowing
• Changes attributed to onset of Alzheimer’s versus investigation of other possibilities
• Need for a baseline of abilities – for comparison• Assessment / diagnosis process
• Importance of early identification - Planning for future
(national Task Group on Intellectual Disabilities and Dementia Practices)
Survey - Main Challenge Providing Care (n=317) open ended• Array of Direct Care Issues & concern for QoL
0
50
100
150
200
250
203
9486
77
29
Main Challenges
Freq
uenc
y
Preliminary Findings – 4. Providing CareJokinen, et al, 2012
Critical question becomes – where will the person live?
Continue to live at home?• Alone - eventually - no• With family• With unrelated adults
Move to a different homethat provides dementia care?
Move to a “nursing” home?
• Diverse experiences, needs, responses
What’s needed• Staff trained in aging & dementia• Support to live a good life • Inclusion in public policy / plans
Advanced Mid Early
Conclusion
• Transitions are periods of time that occur across the lifespan• Middle aged & older adults with Down syndrome as well as their
families face unique challenges• Pitfalls & strategies - manage transitions
• Planning helps - although compromise may be needed• Unplanned transitions – on demand situations – are chaotic