Down syndrome and Aging: Issues of Quality life
for individuals and families
Roy I Brown, PhD.
Emeritus Professor University of Calgary Canada
&
Flinders University Australia
Adjunct Professor University of Victoria
E-Mail rbrown@dsrf.org
C 2015
AGEING - THE PROCESS
AND THE CHALLENGE.
Two types of People -Two Issues:
Those who are aged now
Those who are young and
will age
There are also two cohorts that
need to be taken into account in
relation to aging:1) the parental generation
2) the offspring (Person with
Down and siblings)
Summary of Study of people with Down syndrome in
Rome. (age 0-64 years). Bertoli et al.
Once an adult there is frequently a decline in activities
in social, educational and recreational pursuits and what
employment there is reduces fairly rapidly.
Although there are wide variations trends are clear.
Most of time is spent at home with parents having most
contact. Increasing amount of time said to be watching
television.
Dr J Carr. Personal communication.
2015
A population sample of babies with Down
Syndrome, born in same year has been
seen, and tested by the author, first at age
six weeks and then at intervals.
Adults at 21 and 30 years, and at five year
intervals to 45, then at 47 years and now
at age 50.
Dr Janet Carr. Personal communication
Sample now aged 50.
A quarter of the 27 people still live at home.
most with a surviving parent
Well over half were in charity, health, private or
social services facilities.
Two had part-time jobs though only one of
these was paid.
Janet Carr. Personal communication.
Shopping
96% of the adults , varying from age to age, and reducing
to 45%, went shopping . At 50 years only 18% were
shopping independently.
Four of the once-independent shoppers were later among
those with dementia.
(one man, living, with his disabled mother, until age 45, did
all her shopping, posted her letters and collected her
pension.)
Genetic and Environmental
factors.
Interaction- InteractionInteraction.
Now to Quality of Life and
Wellbeing
QOL Meaning
What does the quality of
life approach mean?
a) For the Individual with Down
syndrome.
b) For the Family.
c) For the Community
d) For Services.
e) For Policy
(See Schalock et al, (2002)Mental Retardation,40(6)
Also Schalock (2005) JIDR,49.
Questions 2
What are the things we need to do to
make full use of parental interests and
involvement?
What are the challenges to ensuring the
rights of the person with Down syndome?
What sorts of exclusion go on in our
services and how can these be dealt with?
Quality of Life
Quality
of Life
Age
QUALITY OF LIFE - PROGRESS &
VARIABILITY
Quality
of Life
Age
If we use a quality of life approach
 How do we define quality?
 What are we prepared to do socially and
psychologically?
 How will we sensitize our services?
 What are we prepared to do economically?
 How can parents and people with Down
syndrome help to shape policy?
Key definitions
Experienced when a person’s basic needs are met.
There are opportunities to pursue and
achieve goals in major life settings.
When there is reduction of the discrepancy
between a person’s desires and unmet needs.
The degree to which an individual enjoys important
Possibilities in their life.
See, for example, Brown et al. (1989), Renwick,
Brown, & Nagler (1996), Goode (1994),Felce &
Perry in Brown,1997, Cummins (1997)
Being etc
Being
Belonging
Becoming
Renwick and Brown, I. 1996
Quality of life (as applied to Down
syndrome)
General Principles
Dignity of disability
Ethically based policy and practice
Personal and professional values
Duty of care, risk and safety
Normalization
Exclusion/Inclusion
Specific aspects of development and learning
The individual
Resilience
Perception
Self-image
Empowerment
Personal control
Intra and inter personal variability
(For example how does familiarity and unfamiliarity impact the
above?)
The Environment
Life domains
Holism
Imagining the future
Lifespan
Opportunities and choices
QOL concepts are interrelated giving opportunities
for different and multiple means of support for the
individual with Down syndrome.
For example*,
leisure activities can be better supported when
friendships can be made and physical development
through activity can enhance overall health and
wellbeing
*Brown, Roy. I. (2009) Friendship for People with Down Syndrome (Part 1
& 2) Hand-in-Hand Fall. Burnaby/Canada: Down Syndrome Research
Foundation.
Considerations for individual & family
AGE AND GENDER OF MEMBERS
CULTURAL DIVERSITYRIGHTS
CULTURAL FACTORS
INCLUSION/EXCLUSION
DISCRIMINATION
BARRIERS
BOUNDARIES
Exclusion & Inclusion
CAN BE:-
PHYSICAL
SOCIAL
PSYCHOLOGICAL
EDUCATIONAL
Aspects of Exclusion
1.SHORT OR LONG TERM (Specific time or placelifetime)
2. INDIVIDUAL OR GROUP
(E.g. Gender or intercultural)
3. INTER GENERATIONAL (Young and older)
4. INSTITUTIONAL (Large residential facility, group
home, family home, independent living)
5.WITHIN THE COMMUNITY (Local neighborhood,
employment environment, or wider community)
6.WITHIN THE HOME (Communication amongst
family members, access to family events)
EXCLUSION HAS RULES AND VALUES WHICH ARE
EXCLUSIVE & HIERARCHICAL
Aspects of inclusion
INCLUSION REQUIRES:
CONSCIOUS AWARENESS AND INSIGHT
PERSONAL CHOICES AND INDIVIDUAL CONTROL
INTER-RELATEDNESS
(i.e. Personal expression across life domains rather than program or policy
domains)
LIFE SPAN IN ORIENTATION
EMPOWERING, ACCESSIBLE AND
NON-DISCRIMINATING SOCIETIES
NON HIERARCHICAL
Forward planning for the lifespan (Example)
Prepare a book of photos of the individual across
his/her lifespan starting from birth.
Ensure the person with Down syndrome takes
part in putting it together.
Ensure there is a back-up copy
Ensure care personnel have access to the book
and interact with her or him.
MEASUREMENT
INDIVIDUAL & FAMILY QUALITY OF LIFE
Individual and Social Indicators
Perceptual and Objective
Personal not Proxy
Quantitative and Qualitative
Aims
Assessment
Practical application and intervention
Evaluation
Research
Considerations for individual & family
CULTURAL DIVERSITYRIGHTS
CULTURAL FACTORS
INCLUSION/EXCLUSION
DISCRIMINATION
BARRIERS
BOUNDARIES
STRESSORS - Acute (intensity)
Chronic (duration)
VULNERABILITY - Environmental Levels
(see Bronfenbrenner)
PERSONAL (e.g., personality constructs, health, gender
& age)
Measurement (Instruments)
The Resident Satisfaction Inventory (Burnett,
Rehabilitation Questionnaire. A Personal
Guide to the Individual’s Quality of Life
(Brown & Bayer 1992)
The Comprehensive Quality of Life Scale
(Cummins, 1993)
Quality of Life Questionnaire (Schalock & Keith,
The Quality of Life Instrument
(Brown. I, Raphael & Renwick, 1997)
The Family Quality of Life Survey (Brown. I, et al,
1989)
1993)
2006)
Measurement (instruments)
Family Quality of Life
The Beach Center Family Quality of Life Scale (FQOL Scale)
Hoffman, Marquis, Turnbull, Poston, & Summers, 2005;
Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis,
J.,Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and
measuring family quality of life. Journal of Intellectual
Disability Research, 49(10), 777-783.
Family Quality of Life Survey: Main Caregivers of
People with Intellectual or Developmental
Disabilities
Brown I., Brown R. I., Baum N. T., Isaacs B. J.,
Myerscough T., Neikrug S. et al. (2006).
Surrey Place Centre, Toronto, Canada.
www.surreyplace.on.ca
Once you have accessed the website click on
current research and scroll
to Health and well being
Click on International Family Quality of Life Project
Domains in FQOL Survey
Brown. I et al (2006)
1.About Your Family
2. Health of the Family
3. Financial Well-Being
4. Family Relationships
5. Support from Other People
6. Support from Disability related Services
7. Spiritual and Cultural Beliefs
8. Careers and Preparing for Careers
9. Leisure and Enjoyment of Life
10. Community and Civic Involvement
Family Graph
DOMAINS
Percentages
1. Health
95%
90%
85%
80%
75%
70%
65%
60%
55%
50%
45%
40%
35%
30%
25%
20%
15%
10%
2. Financial WellBeing
3. Family Relations
4. Support From
Other People
5. Support From
Disability Related
Services
6. Spiritual and
Cultural Beliefs
1
2
3
4
5
6
7
8
Domains
Down
Percentage Families satisfied or very satisfied. (Young families
with child with Down syndrome- Canadian Data) Adapted from
Brown et al (2006) JPPID- With Permission.
9
7. Career and
Preparation for
Career
8. Leisure and
Enjoyment of Life
9. Community and
Civil Involvement
SUMMARY OF FINDINGS (See detail BROWN, R.I., & BROWN, I. (2014) FAMILY QUALITY OF LIFE.
IN: MICHALOS AC (ED.). ENCYCLOPEDIA OF QUALITY OF LIFE AND WELL-BEING RESEARCH. DORDRECHT,
SPRINGER.
A noticeable number from several different countries report:
– Most families are not satisfied with aspects of disability
services even in countries that have many services. This
appears to relate not simply to the individual with a
disability but to the needs of the family, often associated
with interactive challenges
– Families, in almost every country that have a son or
daughter with a disability, often get little practical or
emotional support from relatives, neighbours, and friends.
Lack of support from relatives
Lack of help from friends and neighbors
Lack of support from religious
communities to which individual
families are affiliated
Challenges for siblings
A need to talk to a professional about family issues
and concerns as well as disability
Experience suggests that most individuals
(families) want to function effectively. They do not
wish to be dependant “on the system”
They want to solve their own problems but need
support for the family for key items and for
stressful periods.
They wish to avert major stress and therefore
services need be forward looking with forward
planning.
-It is important to consider the needs of all
families, but particularly those where the person
has behavioural and emotional disturbance, in
terms of support for the other family members.
- It is critically important to take cultural
background and local service values into account.
What other comments do we hear from primary
family carers (parents and adult siblings) :
Lack of short term respite care when
required.
(Longer term - What respite is necessary when
adult
child is behaviorally disturbed?)
Lack of necessary information.
Impact of the children on family life.
Parents no vacations over many years.
Parents unable to go together as a
couple
Employment has to change or
terminate.
Siblings unable to study and have
friends home.
Older families indicate higher satisfaction scores,
but US studies show this is also true of the general
population of older people.
Why might this be so?
Generational differences in mores and social
history
Type of disabilities differ between older and
younger families - Why should this be?
1. The older population who have children with
disabilities sometimes comment on support - emotional
and practical- they receive from their children with ID, particularly when at
home.
2. Although parents are reasonably satisfied with
their own health they note concern over their
own life expectancy and what will happen then!
3.It is necessary to recognise that parents who are older may have children
with disabilities who are more mildly disabled than younger parents.
4. Monitor families more frequently and their needs. Many families have
satisfactory quality of life but may still be or become vulnerable.
5. Our interviews and ratings suggest that much more family directed
support is required of services particularly where the person is multiply and
behaviorally disturbed. (Note- Parents need to be involved in policy
development).
Some further implications for aging
and Quality of Life/Wellbeing
Assessment & diagnosis
Need to involve family member in dementia
assessment process; they have historical
medical /behavioral knowledge of the person
Distinction between dementia & depression
Lack of knowledge about keeping a record of
abilities that can facilitate assessment if / when
level of ability changes (as per guidelines)
Family members may think residential staff has
some responsibility to keep the record of
abilities
Psychological and Social Needs of Ageing
Persons with Intellectual Disabilites
Keep environmental and Social aspects of life
familiar
Maintain choices
Promote self image
Keep contact with family and friends
Make allowance for slowing pace of understanding and action
Provide supports in order to maintain and encourage activities
Ensure activities like work, recreation and play
are available
Helping others & interactive routines are encouraged
Promote positive self image
Recognize and make allowance for their history
Ensure a photographic album of the individual’s major life
events is available with brief commentary and this is also
made available to carers.
PROFESSIONAL / EDUCATION
Professional Practice
Values of Personnel
Training of Practitioners
Structure and Values of Service Delivery
Environment of Intervention
Consumer choices re Intervention
Activities of Intervention
Ethical Issues
Development of policy
What are our values individually and how
do they matter in delivering service and
care?
What ethical and professional challenges
will we face now and in the future in terms
of care, support, management and policy?
Education-Training / information needs
For family members, adults with ID, staff & medical
professionals
A clear understanding of QOL/FQOL framework for
practice
Signs & symptoms to promote early identification
of change
Knowledge and practice around death & dying
Enhanced communication between families,
adults with ID, and services
REFERENCES
Adults with Down syndrome. Series Edited by Roy I. Brown. 13 short volumes. Portsmouth: Down
Syndrome Educational Trust. UK. (2004-2008).
M. Bertoli, G. Biasini, M.T. Calignano, G. Celani, et al. (2011) Needs and challenges of daily life for
people with Down syndrome residing in the city of Rome, Italy_1432 Journal of Intellectual
Disability Research, 55(8), 801–820
Brown, I., & Brown, R.I (2003). Quality of Life and Disability : An Approach for Community
Practitioners. London : Jessica Kingsley Pubs. (This contains most of the other references refered to
in the presentation).
Brown RI. Quality of life for people with disabilities: Models, research
and practice (2nd ed.). Cheltenham, UK:Stanley Thornes, 1997.
Brown, Roy. I. (2009) Friendship for People with Down Syndrome (Part 1 & 2)
Hand-in-Hand Fall. Burnaby/Canada: Down Syndrome Research Foundation.
Brown, R. I. (2014). A lifespan perspective on learning in the context
of Quality of life, pp19-39 In R. Faragher & Clark (EdS).
Educating Learners With Down syndrome. London: Routledge.
Brown Roy .I. & Brown, Ivan (2014). Family quality of life.
In: Michalos , AC (Ed.). Encyclopedia of Quality of Life Research.
Dordrecht, Springer.
Brown, R. I, MacAdam-Crisp, J., Wang, M et al (2006) Family quality of life when there is a child
with a developmental disability..Journal of Policv and Practice in Intellectual Disabilities, 3,(4), 238246
Carr, J. (2012). Six Weeks to 45-Years: A Longitudinal Study of a
Population withDown Syndrome J Applied Reseacrh in Intellectual
Disabilty. 25(5):414-22.
Carr, J & Collins S. (2014). Ageing and Dementia in a Longitudinal
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Cummins, R. 1997. Assessing quality of life. In: R.I. Brown, ed.
Quality of life for people with disabilities: models, research and
practice. 2nd ed. Cheltenham: Stanley Thornes, pp. 50–74.
Cunningham, Cliff & Brown, Roy I. (2014) Down Syndrome.
In: Michalos AC (Ed.). Encyclopedia of Quality of Life Research.
Dordrecht, Springer.
Faragher & Clark, B (Eds). Educating Learners With Down syndrome. London:
Routledge.
Goode D. 1994 Quality of life for persons with disabilities:
International perspectives and issues. Cambridge, MA: Brookline.
Jokinen, N.S, & Brown, R.I. (2011). Family Quality of Life & Older-Aged
Families of Adults with an Intellectual Disability.In R. Kober (Ed).
Enhancing the quality of life of people with intellectual disability:
From theory to practice. New York: Springer.
Kober, R (2011) (Ed) Enhancing the quality of life of people with
intellectual disability: From theory to practice ,New York: Springer.
Renwick, R. and Brown, I. 1996. The Centre for Health Promotion’s conceptual
approach to quality of life. In: R. Renwick, I. Brown and M. Nagler, eds.
Quality of life in health promotion and rehabilitation: conceptual approaches,
issues and application. Thousand Oaks, CA: Sage, pp. 75–86.
Schalock, R. L. (2005). Introduction and overview. Journal of Intellectual Disability
Research, 49, 695-698.
Schalock, R.L. & Verdugo, M.A. (2012) A leadership Guide for Todays
Disabilities Organizations: Overcoming Challenges and Making
Change Happen. Baltimore:Brookes.
Schalock R, Brown I, Brown R.I., Cummins R.A., Felce D., Matikka L., et al. 2002
‘Conceptualization, measurement, and application of quality of life
for persons with intellectual disabilities: Report of an international panel of
experts’. Mental Retardation. 40(6):457-70.
Zuna N, Brown I, & Brown R. (2014) Family quality of life in intellectual and
developmental disabilities: A support-based framework to enhance quality of life
in other families. In: Brown R, Faragher RM, eds.
Quality of life and intellectual disability: educational and social contexts.
New York: Nova Science.
Family Quality of Life Survey- Brown, I., et al (2006)
www.surreyplace.on.ca
Once you have accessed the website click on current research.
and scroll to Health and well being
Click on International Family Quality of Life Projectnternational
Family Quality of Life Project