Artículo: Towards Inclusive Aging. The Personal Record

María del Carmen Malbrán
University of Buenos Aires and National University of La Plata. Argentina


Abstract

A preliminary version of the Personal Record is presented. It is an assessment tool aimed at planning and improving intervention in the elderly. Successful assistance contributes to familial and social inclusion, reducing the risk of isolation, discrimination and institutionalization .
Worded in Spanish explores individual characteristics, the environment where the person lives and interacts and the complexity of tasks. Dimensions, contents and items were selected in terms of their cultural relevance.
Competencies and attitudes are rated in a three point scale: preserved/usual, preserved with support/ occasional and discontinued/absent.
Reliability and validity controls will cover contrasting information from different sources, face and eco-cultural validity and predictive power on evaluation- based evidence.
Selected items coming from a case study illustrate the technique.


KEYWORDS

Personal Record. Quality of life. Everyday living. Individual-context-task relation. Valued social roles.


…Aging is only partly a biological issue.
Environments age as well as individuals. Fortunately, it is possible to delay this process. In doing so, we have to analyze the environmental deteriorating effects on the elderly.
Those who help people who are able to help themselves, have a destructive influence because they promote that enjoyment of life does not longer depends on behavior.
What we like will depend a lot on the consequences of our actions, whether they reinforce us with positive experiences. This is the secret of enjoying old age.
Keeping in touch with the world becomes more complex with age… Getting along with other people is a primary factor in terms of making life more enjoyable. Living with others is one way to facilitate having satisfying relationships.
…Keeping busy, especially at productive and interesting activities, pursuing activities that also produce excitement…adding an idiosyncratic list of possibilities.
…Simplifying and clarifying one’s environment is recommended, because if there are too many things in too many different places in one’s life, anyone can become confused - at any age!

Skinner, B.F. (1904-1990)
“Enjoy Old Age”

There were remarkable increases in life expectancy during the last century, due to advances in medicine, public health, science, education and technology.
Many adults are surviving into old age. In spite of gradual declines in various functions, they can have active and varied lifestyles with a good quality of life (WHO, 2000).
The number of people aged 65 years and above account for 7% of the world’s population. 65% of these are women (Noonan Walsh, et al.,2001). Gender is recognized as a determinant of health. Access to health care is still dependent on gender in many places in the world. Social roles assigned to women, opportunities in the labor market, decision making , and familial duties vary between cultural contexts (Breitenbach, 1999).
Quality of life is conceived in terms of personal independence, access to social opportunities, home life management, environmental control, community involvement and social relations (Schalock et al., 2001).

Older people have health needs, reflecting the individual, social and economic factors which have shaped their daily life (WHO, 2000). Loss in physical health may provoke sensory impairment, swallowing disorders, urinary incontinence, constipation, dental troubles, sleep disturbances, restrictions on diet, medication abuse demanding direct assistance.
Environments which foster healthy social relationships, trust, economic security, sustainable development and other factors relating to advancing the health and well-being of citizens have been identified as priorities (WHO, 2000).
Satisfying complex needs require training from the staff, acquaintances and the support persons. Sometimes over-protection from the carers does not allow the person to cope with situations. This is applicable to the physicians who are not specifically prepared to pay due attention to the patient’s actual psychological traits and his/her personal history (Gagliardino & Malbrán, 2002).
In considering initiatives to improve the quality of old age, realization must reflect regional and cultural differences. The UN International Plan of Action (1982) states that each country must respond to demographic trends and the resulting context of its own traditions, structures and cultural values.

Programs aimed at maintaining functional abilities and extending competence in later life, analysis of factors which lead to increased inclusiveness in society, cross-cultural studies that will ensure common aspects of good quality provisions as well as specific cultural influences, cultural and economic factors that support family care giving, considering the ways in which health and social policies can be improved will benefit the support for all older people.
The individual set of antecedent conditions is obtained linking behavioral, cognitive and affective outcomes with developmental tasks of ageing in the context of a variety of interacting individual, social and environmental factors. Thus, screening instruments must be developmentally and culturally appropriate (USNIH, 2001). However, evaluation instruments are often not available in local languages.
Psychological assessment has to overcome communication barriers , resistance to cooperation, confusion and fears of giving information that reduces the reliability of reporting (Shoumitro, et al.,2001).

Assessment of functional abilities involves interviewing the person as well as their relatives and carers and exploring the environment as a contributor (Stancliffe,1999). To build living environments responsive to the needs of older people involves the persons themselves, the staff, the family and the community. Planning has to be minimally restrictive, culturally sensitive and foster the autonomy of the person as well as preserve the respect for the individuals and their families, the involvement of the person’s own needs and wishes and the participation of that person in valued social roles (Jones et al., 1999).
Older people constitute a heterogeneous population in terms of physical and mental health, motor and communication skills. The existing competences vary on amplitude, extent of maintenance, interest of performing, rhythm, speed of losing and relevance for daily life, affecting domestic and personal routines, hobbies, use of free time and social behaviors.
The elderly are a growing population who need support to maintain or improve their quality of life whether or not has been any diminution of intellectual capacity.

Leisure activities implies devoting free time in constructive and age appropriate ways. Idiosyncratic games and pastimes offer accessible means in terms of abilities and cost. Leisure is a human right that may be put into practice in inclusive community settings (Dattilo, Schlein, 1994). Challenges that hindrance inclusion are derived from changes in health status, in social networks, in restricted community access, in underdeveloped leisure skills, in limited opportunities for choice-making, and in lack of support services (Browder, D., & Cooper, K., 1994).
The description of the current status of older individuals for daily life must take into account existing capabilities, as well as the opportunities offered by the environment and the nature of the task. Assessment techniques to identify individual existing traits, their functional relevance and the environmental correlates will be useful in confronting the challenges (Schoumitro te al, 2001).

Aging affects abilities and attitudes in different ways and to different extents. The deterioration and loss of skills for everyday life increase with aging. The pace of loss is associated to the person traits and his/her history, environmental factors and their interaction. It is possible to identify preserved skills previously acquired, those that are partially maintained and lost skills and attitudes.
Paying attention to needs, expectations and interests of older people contributes to self-esteem, reduces dependence and stimulates the perception of them as valuable members of society.
The living conditions of the individual improve the quality of life while ensuring that the elderly can continue living at home as opposed to be sent to institutions (Aalto, 1997).
The efficiency of intervention strategies must be evaluated as they are being implemented.
Cultural environment varies according to beliefs, expectations, practices, assigned roles, opportunities for leisure and responsibilities assigned to older people (Duvdevany, 2002). Due attention to the environment promotes inclusion and reduces the cost of assistance through the use of the available resources. A suitable environment can delay the aging process. One alternative consists of empowering aimed at maintaining the existing capabilities, compensating those that have been lost and building new skills and attitudes. Human and material aids need to be adjusted to the person, the immediate environment and the social and cultural milieu.
Services that create opportunities for the enjoyment of life within inclusive contexts are a tool for fighting against social isolation and institutionalization.
Social demands become more complex as older people become more aware of their difficulties and as people become more rejecting.


An anecdotal report

We Are Survivors
(For those born before 1940)
We were born before television. Before penicillin, polio shots, frozen foods, Xerox. Contact lenses, videos and the pill. We were born before radar, credit cards, split atoms, laser beams and ballpoint pens, before dish –washers, tumble driers, electric blankets, air conditioners, drip-dry clothes…and before man walked on the moon.
…We were before day centers , group homes and disposable nappies. We were never heard of FM radio, tape decks, artificial hearts, word processors, or young men wearing earrings.
…We who were born before 1040 must be a hardy bunch when you think of the way in which the world has changed and the adjustments we have had to make. No wonder there is a generation gap today…BUT
By the grace of God…we have survived!

The Daily Telegraph. September 17, 2002

The access to live a dignified and enjoyable life may challenge the cultural expectations and deviate from existing views of aging considering the role of the older person as open-ended, with new options dependent on the ways in which we think and act about them.
According to these ideas, in important issue for providing assistance to older adults is to pay attention to the existing competencies. Norm –referenced tests results need to be enriched with criterion referenced measures considering the relation individual-context-task and the personal history of learning and behavior.
Exploration should be specific to intervention. It is expected that intervention based on a relevant exploration may reduce dependence, apathy and/or disruptive and autistic behavior, adapt the task to the individual, contribute to arrange a facilitative environment, help to distribute the day schedule and stimulate engagement in useful and rewarding activity (Schalock et al.,2001) .


The Personal Record

The Personal Record (Spanish version) is an assessment instrument aimed at improving the quality of support and services, providing means to preserve life within the family, avoiding rote and child –like practices and valuing the person as a community member.
The Personal Record is a semi-structured inventory consisting of statements with options complemented with questions posed by the examiner according to the case.
Scores and qualitative results may be applied to plan intervention.
Individual traits refer to sensory, motor, communicative, affective and social description. They were selected in terms of their applicability to everyday living ( Bronicki, G. et al, 1987).
Contextual exploration considers home environment, local-cultural practices, and availability of supports. The context description covers facilities and obstacles, available supports, social atmosphere, kind of interactions, people who interact, variety of environments, home environment, local and cultural aids and influences.
Task assessment is related to complexity and relevance.
The target population are older women with and without diagnosis of intellectual disability.
Data on the personal history are based on the familial history, chronological development and reminiscence of the past.
Sources of information are based on observation, self-report and interviews with the person and with people who regularly interact with the elder: relatives, support or accompanying persons, neighbors and professionals. Whenever possible, exploration takes place in natural and informal contexts (Hughes, et al., 1996, Perry and Felce, 2002).


Method
Dimensions

The dimensions were selected taken into consideration:
Skills and tasks relevancy for daily living.
Attitudes and interests related to the person´s welfare, her inclusion and social interaction.
Kinds of support to preserve and enrich the quality of life.
Opportunities and pressures, arrangements and availabilities that affect every day life and contributes to inclusion.
Social networks within family, friends, neighbors and community.


Procedure

Observation in natural habitats (in-home assessment)
Interviews with older women and those who regularly interact with them
Filling the protocol (checklist) with comments
Contact with the person, her relatives, supportive or accompanying persons, aimed at obtaining information about characteristics and activities not included in the protocol
Analysis of quantitative and qualitative data.
Identification, selection, formulation and brief description of the target behaviors for intervention.


Content

Activities: personal routines (hygiene, medication self-management, feeding); home management (shopping, laundry, cooking, cleaning); hobbies and leisure (walking, sports, gym, cards, gardening, child care, pet care, singing, dancing, going out, theatre, cinema, TV, concerts, listening to music, performing musical instruments, knitting, sewing, reading, crosswords, board games, videogames); social activities ( parties, club, group meetings, restaurants and cafes, shopping malls, ceremonies, religious retreats, visiting people, phone talks, vacations) .
Handling of means and devices: microwave, cellular phone, transportation, credit cards, prosthesis (glasses, ear aids, dental prosthesis, walking sticks, wheelchairs), emergency and useful addresses and phone numbers.
Amount and extent of social contacts with relatives, friends, neighbors, peers, supportive or accompanying persons. Participation in self-help and peer teams and day centers.
Attitudes and interests: likes, tolerance, flexibility, orientation to other persons, sense of humor, disposition for dialogue and interaction, safeguarding of privacy , worries, making decisions, feel valued.

Scaling
A three point scale is used to rate

1.Current Activities (compared to previous)
preserved
preserved with support
discontinued.

2.Attitudes and interests. Social contacts
usual
occasional
absent

3.Handling of means and devices
independent use
use with aid
not use.


Participants
Women aged above 50 with and without intellectual disability, living at familial or substitute homes.

Reliability and validity
The efficiency of the Personal Record is planned as follows:

Reliability contrasting information from different sources: the old woman, the accompanying or support person, the relatives or/and the people who usually interacts with her.
Face validity using plain language, respectful for the adult status and the relevance of questions for adult life.
Concurrent validity taking the personal history as a external criterion.
Ecological validity related to adequacy for local culture and environment. Content validity focused on task analysis in terms of variety, complexity and significance.
Predictive validity checking the correspondence between the results of the Personal Record and the observed performance in the prescribed intervention program.


Preliminary results

A pilot study administering the Personal Record included four old women (two with and two without intellectual disability) .
A common feature is the women’s dependence on the relatives and/or support persons for doing things, including the most personal ones.
In spite of the variety of the impact , heightened pressure on families of old people living at home was observed.
Carers are mostly women. Only a few men show interest and compromise for the elderly.
Preserved and preserved with support abilities and activities are strongly related to the personal history. Skills and preferences are rooted in the past.
Attitudes and interests seem to be more closely associated to psychological traits than to the presence of intellectual disability. The tendency of complaining is an example.
People who interact with or support the elderly tend to solve problems and to cope with situations instead of leaving the responsibility or facilitating the access to the person. Also to speak about them as if they were children.
The complexity of tasks , the kind of interests and the favorite activities make a clear distinction between old women with and without intellectual disability.
Food likes are a powerful source of interest for both groups.
Some potentially rewarding activities are not included in the repertoire of old women. Nobody of them use videogames.
A strong habit to watch TV during long periods is shared by both groups.
Complementary questions not included in the Personal Record protocol suggests the convenience of a clinical -dynamic approach to exploration.


A Case Study
Description

Argentine woman . 93 years old. Living with the family. Use of dental prosthesis and hearing aid. Has an accompanying person during the day. Not medicated(only aspirin’s and digestives).
Information given by the old woman, the accompanying person and her two daughters.

Abilities and attitudes
Selective retention of relatives´ names.
Preference for little babies.
Awareness of memory limitations.
Adherence to fixed daily routines.
Clear food likes, mainly for those that are sweet, salty and tender.
Independent in personal hygiene.
Performing of house management tasks: making beds, setting and clearing the table, ironing, washing and drying dishes, preparing simple food.
Use of medications with support: aspirins, creams, cough syrup, put a bandage.
Reading the newspaper.
Playing cards, lottery and dies.
Playing the piano when encouraged.
Completing crosswords with help.
Possessive with her personal things.
Taking part in family celebrations.
Giving opinions, judgments and complaints.
Sharp sense of humor

Click en la imagen

Concluding Remarks

Many problems of aging, such as lack of interest and the tendency of inactivity can be preventable and /or controlled through detection and treatment. It is possible to identify risk and protective factors (USNIH, 2001, Tracy et al., 2002).
A requirement for screening instruments is to make a distinction between personal related and life related difficulties. Screening instruments need to be developmentally and culturally appropriate. They have to combine self-report, informant measures and anecdotal- narrative reports.
Identifying the profile of older people should focus on charting behaviors and environmental events.
Intervention planning should be individually centered .The lifetime history plays an important role.
Programs need to target specific behaviors.
Instruction and modeling must include training to encourage community living. Community based instruction is an aim of continuing education (Lloyd- Sherlock, 2001).
Services that create opportunities for the constructive use of leisure time within inclusive contexts are a priority for the future.
A contextual approach gives guidelines for intervention helping to decide the types of action that work best for specific populations and circumstances.
The development of every day skills including leisure, would have to be considered before coming on age (Skinner, 1983). This pursuit should take into account available resources, socially valued pastimes and idiosyncratic modes.
Research on the development of lifespan is necessary to provide evidence-based practice on empirical sound base.
Cross-cultural studies may be useful for ensure common aspects of good quality provisions as well as specific cultural influences.
The development of an “aging culture” is at a beginning stage. Progress in the area may contribute to enrich theoretical, methodological and practical implications.

In sum, policies towards inclusive aging should be
Respectful of adult status
Constructive and functional
Responsive to the person’s needs, interests and expectations
Appropriate to available home and community resources
Culturally oriented
Built on existing capabilities
Aimed at compensating and building meaningful skills
Encouraging of physical and mental activity
Favoring of varied modes of communication
Stimulating interaction among generations
Widening of leisure pursuits
Empowering for coping with obstacles and barriers
Increasing the decisional capacity
Avoiding of aversive conditions such as underestimation and labeling
Reducing social vulnerability
Providing continued support ( preventing staff turnover and absenteeism)
Liable to fight against sadness, isolation, fears, anger and depression
Rescuing positive traits of the personal story
Dynamic, able to adapt strategies to eventual changes in the person, the environment and the task.
Promoting of resilience (Rutter, 1987).


References

Aalto, M. (1997). What will happen when his old parents are too tired to go on? Report
published by FDUV. Association for the Welfare of the Swedish speaking Mentally Retarded in
Finland (FDUV) a project concerning aged parents with a mentally handicapped person living at
home.
Bigby, Ch. (1996, July). The informal support networks of older people with intellectual
disability. The British Journal of Developmental Disabilities, Vol. XLII, Supplement.73.
Breitenbach, N.(1999, May). Ageing: achieving a broader view. Paper presented at the AAMR
Conference, New Orleans.
Bronfenbrenner, U. (1979). The Ecology of Human Development. Cambridge, MA: Harvard
University Press.
Bronicki, G.J., S. Ruben. J.A. Summers, C. Roeder-Gordon, A.P. Turnbull, and H.R. Turnbull III.
What’s important in planning a quality of life in the Community for people with developmental
disabilities. (1987). The Preference Checklist. Lawrence: The University of Kansas.
Browder, D., & Cooper, K. (1994). Inclusion of older adults with mental retardation in
leisure opportunities. Mental Retardation, 32, 91-99.
Bruininks,R. (1996) . Using a system approach to assess and improve adaptive
behaviors. The British Journal of Developmental Disabilities, Vol. XLII, Supplement.60.
Calvez, M. (1996). Biography and intellectual disability: the relevance of an approach.
The British Journal of Developmental Disabilities, Vol. XLII, Supplement.63.
Dattilo,J., & Schlein, S. (1994). Understanding leisure services for individuals with
mental retardation. Mental Retardation, 32, 53-59.
Duvdevany, I. (2002). Self-concept and adaptive behavior of people with intellectual
disability in integrated and segregated recreation activities. Journal of Intellectual Disability,
46,419-429
Evenhuis, H., Henderson,C.M., Beange, H., Lennox, N. & Chicoine, B. (2002) Envejecimiento sano.
Adultos con discapacidades intelectuales. Cuestiones de salud física. Siglo Cero, 33 , 13-24.
Gagliardino,J.J. & Malbrán, M. del C. (2002). Magister on diabetes education. Unpublished
manuscript, Faculty of Medical Sciences, National University of La Plata, Argentina.
Grotberg, E. (1995a) The International Resilience Project: Promoting resilience in children. ERIC
ED 383424.
Hogg, J. (1999). Intellectual disability and aging: ecological perspectives from recent
research. The British Journal of Developmental Disabilities, Vol. XLII, Supplement.58.
Hughes, C, Killiam, D.J, Fisher, G.M (1996). Validation and Assessment of a Conversational
Interaction Intervention. AJMR, 100/ 493-509.
Schalock. International Association for the Scientific Study of Intellectual Disability (IASSID) (2002).
Proceedings of the Joint Meeting of the Physical. Health/Mental Health SIRGs . University of
Glasgow, UK.
Jones, E. Perry J., Lowe K., Felce, D. Toogood, S, Dunstan, F. Allen, D and Pagler, J.(1999).
Opportunity and the promotion of activity among adults with severe intellectual disability living
in community residences: the impact of training staff in active support. Journal of Intellectual
Disability Research, 43,. 164-178.
Kober, R., & Eggleton, I.R.C. (2002). Factor stability of the Schalock and Keith (1993)
Quality of Life Questionnaire. Mental Retardation, 40, 157-165.
Lloyd-Sherlock, P. (2001) Living to a ripe old age- health care for an ageing population.
http://www.id21.org/getweb/h2plslg1.html
Malbrán, M. del C. & Villar, C.M. (2000). United Nations Standard Rules: A version for non- readers
( SRUN)International Special Education Congress 2000 (ISEC). Journal of Intellectual
Disability Research, 44.730
Malbrán, M. del C. & Villar, C.M. (2001). The Standard Rules of the United Nations on the
Equalization of opportunities for persons with disabilities ( in Ainscow, M & Mittler, P., Eds)
Including the Excluded. Proceedings of the 5th International Special Education Congress.
UK: University of Manchester.
Malbrán, M. del C. (2002). Everyday life in the elderly. The Personal Record. Physical
Health/Mental Health SIRG Meeting of IASSID.University of Glasgow,UK .
McCallion, P. (2001, December 2). Age of success. Albany Times Union.
McConkey, et al.(1999). Communications between staff and adults with intellectual
disabilities in naturally occurring settings. Journal of Intellectual Disability Research,
43,
Mental Health in Mental Retardation. Theory and Practice. (2001,September). Abstracts.
Third European Congress. Berlin, Germany.
National Institute of Health US (NIH) Website.(2001) Workshop on Emotional and behavioral health
in persons with mental retardation/developmental disabilities: research and opportunities.
American Journal on Mental Retardation, 100, .
Noonan Walsh, P. & Heller,T. Eds. (2002). Health of Women with Intellectual Disabilities.
UK: Blackwell Publishing Company
Noonan Walsh, P. & LeRoy, B.(2002). Successful aging for women with intellectual
Disabilities. Interview protocol.
Pennington, B. (1996). Measuring age- related changes in people with an intellectual
Disability. The British Journal of Developmental Disabilities, Vol. XLII, Supplement.
Perry, J and Felce, D (2002). Subjective and objective quality of life assessment : responsiveness,
response bias, and resident: proxy concordance. Mental Retardation,40. 445-456.
Rioux, M. & Bach, M. Eds. (1994). Disability is not Measles: New Research Paradigms in Disability.
Toronto, Canada: The Roeher Institute.
Rutter, M. (1987). Psychosocial resilience and protective mechanisms. American Journal of
Orthopsychiatry. 57: 316-331.
Schalock, R., Brown, I., Brown, R., Cummings, R., Felce, D., Matikka, L., Keith, K.D., and
Parmenter, T (2002). Conceptualization, measurement and application of quality of life for
persons with intellectual disabilities: Report of an international panel of experts. Mental
Retardation,40. 457-470.
Shoumitro, D. et al. (2001). Practice Guidelines for the Assessment and Diagnosis of
Mental Health Problems in Adults with Intellectual Disability. Brighton: Pavilion.
Skinner, B.F. and Vaughan, M.E (1983). Enjoy Old Age: A practical guide. WW Norton: NY.
Stancliffe, R.J. (1999). Proxy respondents and the reliability of the Quality of Life
Questionnaire empowerment factor. Journal of Intellectual Disability Research,
43, part three, 185-193.
Staudinger, U., Marsiske, M., & Baltes, P., (1993) Resilience and levels of reserve capacity in later
adulthood: Perspectives frim lifespan theory. Development and Psychopathology. 5:541-566.
The Daily Telegraph (2002, September 17). We are survivors (for those born before
1940).
Torpe, L., Davidson, P. & Janicki, M. (2002). Envejecimiento sano. Adultos con
discapacidades intelectuales. Aspectos bioconductuales. Siglo Cero, 33,
5-11
Traci, M.A; Seekins, T., Szalda-Petree, Ravesloot,C. (2002). Assessing secondary conditions
among adults with developmental disabilities: a preliminary study. Mental Retardation,. 40,nº2.
119-131.
United Nations (UN) (1994). The Standard Rules on the Equalization of Opportunities for People
with Disabilities. United Nations (1995) The economic, social and cultural rights of older persons.
CESCR, New York: UN.
Walsh, P.N., Heller, T., Schupf, N. & van Schrojenstein Lantman de Valk, H. (2002).
Envejecimiento sano. Adultos con discapacidades intelectuales. Salud de la mujer
y asuntos relacionados. Siglo Cero, 33, 25-38
World Health Organization (WHO) (2000).Healthy Ageing-Adults with Intellectual Disabilities:
Summative Report. Geneva: WHO Publications.
WHO, IASSID, Inclusion International. (2000). Ageing and Intellectual Disabilities
Improving Longevity and Promoting Healthy Aging. Geneva: WHO Publications.



Towards Inclusive Aging. The Personal Record by María del Carmen Malbrán is licensed under a Creative Commons Reconocimiento-No comercial-Sin obras derivadas 2.5 Argentina License.
Based on a work at mariamalbran.blogspot.com.
Permissions beyond the scope of this license may be available at http://creativecommons.org.