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

Nancy.Jokinen@unbc.ca

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

Also

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)

2. Transitions that older-aged adults with Down syndrome and their families face

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)

Transition:Moving from the parental / family home

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

Transitions

Changes services - Staffing- Moving within a residential service

• 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

What can be done?

• Family presence• Agency involvement• Advocacy • Chronicling history

Transitions related to the onset & progression of dementia

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