Frailty vs. Disability Distinctions in People With Intellectual Disabilities

Frailty vs. Disability Distinctions in People WithIntellectual Disabilitiesjppi_247 49..58

Barbara Brehmer and Germain WeberUniversity of Vienna, Vienna, Austria

Abstract While the extent of research on age-related frailty among adults in general has increased substantially during the past twodecades, there has been a void in equivalent research with respect to adults with intellectual disabilities (ID). While frailty anddisability have been seen as different, but overlapping, concepts in the field of ID, the concept of frailty is missing an empiricalfoundation. The authors define the concept of frailty as applied to adults with ID, using indicators based on Fried’s definition (i.e.,a physiological state of increased vulnerability to stressors that follows from decreased physiological reserves and dysregulation of aphysiological system) and Rockwood’s frailty criteria (multisystemic instability, change over time, allowance for heterogeneity,association with aging, and association with an increased risk of adverse outcomes). They developed a frailty questionnaire and testedtheir concept of frailty against the concept of disability. To do this, frailty-related data using self-report and third-party interviewswere collected within the Austrian component of the POMONA II Project using a sample of 190 people with ID aged between 18 and76 years. Variables in four frailty domains—social, cognitive, physical, and mental health—were assessed and defined as contributingto causal frailty factors. Similarities of the frailty syndrome were analyzed between the general population and the population withID. The results offer evidence of a “frailty syndrome” affecting older people with ID.

Keywords: aging, falls, frailty, intellectual disabilities, Vienna Frailty Questionnaire for People with ID (VFQ-ID)

INTRODUCTION

Over the past two decades, there has been a substantialincrease of frailty-related publications related to the generalpopulation (Hogan, Mac Knight, & Bergman, 2003; Morley,Perry, & Miller, 2002; Rockwood, Hogan, & Mac Knight, 2000). Inaddition, during this period, the word “frailty” has been increas-ingly used in the intellectual disability (ID) literature, but its useremained mostly associated with aging issues of family carers(e.g., Barton, 1998). However, though longevity and risks relatedto old age in people with ID have been widely discussed inresearch literature, outcomes of genuine frailty research for the IDpopulation outcomes were not available.

One of the reasons for the dearth of research into frailtyamong adults with ID might be that disability concepts are seenper se as sensitive to specific age-related limitation in functionalcapacities. Furthermore, the emerging concept of frailty is char-acterized by a variety of definitions, with most of them notreflecting the concept of disability in a systematic way, whichprobably has contributed to the lack of a widely accepted defini-tion of frailty (Hogan et al., 2003). In general, frailty definitionsvary between those with a focus on decline in physiologicalsystem functioning (e.g., Cohen, 2000; Hammerman, 1999) and

those promoting an activities of daily living (ADL) or an instru-mental ADL (IADL) foundation (Miles et al., 2001; Nourhashemiet al., 2001). For instance, Campbell and Buchner’s (1997, p. 315)definition is an essentially physiological conception. They notethat frailty is a “condition or syndrome which results from amulti-system reduction in reserve capacity to the extent that anumber of physiological systems are close to, or past, the thresh-old of systematic clinical failure.” This definition contrasts withBrown, Renwick, and Raphael’s (1995) position, which suggeststhat frailty occurs when there is diminished ability to carry outimportant practical and social activities of daily life. However,there is agreement among researchers that frail older adults aremore vulnerable, have a higher risk for a range of adverse healthoutcomes (e.g., falls and mortality), and increasingly use healthservices and similar resources more often.

A popular definition of frailty has been put forward by Fried(1994). She describes frailty as a physiological state of increasedvulnerability to stressors that follows from decreased physiologi-cal reserves and dysregulation of a physiological system. Shefocuses on the description of the clinical phenotype of frailty,with loss of endurance and body weight; decreased balance,mobility, and cognitive functioning; wasting muscle mass andstrength; slowed performance; and relative inactivity consideredas core symptoms. The assessment strategy refers to self-reporteddata as well as performance tests of five elements: weakness,weight loss, slow walking speed, fatigue, and low levels of activity.

Within the dynamic model of frailty as suggested by Rock-wood, Fox, Stolee, Robertson, and Beattie (1994), frailty is viewed

Received July 31, 2009; accepted October 18, 2009Correspondence: Barbara Brehmer, Institute of Clinical, Biological andDifferential Psychology, University of Vienna, Liebigg 5, Vienna, 1010Austria. Tel: +43 14277 47896; E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 7 Number 1 pp 49–58 March 2010

© 2010 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

as if it were a balance beam, in which the balance between assetsand deficits determines whether a person can maintain indepen-dence in the community. Clearly, this perception of frailty is,unlike that of Fried’s, not solely focused on physiological symp-toms but one that views frailty as a dynamic, complex interactionof biological, psychological, cognitive, and social factors. There isno disagreement with the clinical phenotype of Fried. Bothresearchers agree that frailty is associated with aging. Frailty,according to both workers, is characterized by fluctuations ofhealth status, which result successively in negative health out-comes. In addition, Rockwood et al. (2000) suggested five criteriato be included in a frailty definition: multisystemic instability,change over time, allowance for heterogeneity within a popula-tion, association with aging, and association with an increasedrisk of adverse outcomes.

Historically, frailty has been equated with disability(Fried, Ferrucci, Darer, Williamson, & Anderson, 2004; Rock-wood et al., 2000), but more recently, researchers haveattempted to differentiate these two concepts, leading to con-ceptual disjunctions. Fried, Tangen, and Walston (2001) statedthat disability often refers to the inability to independently carryout instrumental and basic ADL. They concluded frailty anddisability to be distinct but overlapping concepts. So, not allolder persons with disabilities are frail and not all frail eldershave disabilities. Disability, though, can be an adverse outcomeof frailty, and if frailty is the pathway to disability for an indi-vidual, he or she does not cease to be frail with the onset ofdisability. This notion is supported by results of a poll among 62geriatricians (Fried et al., 2004). However, Fried’s reference todisability is limited to physical disabilities, and until now, therehas been no evidence for these findings with respect to peoplewith ID.

The aim of the present study was to analyze “frailty,” definedas a multisystemic instability, in a population of people with ID.The Vienna Frailty Questionnaire for People with ID (VFQ-ID)based on Rockwood’s criteria and Fried’s description of frailty forthe general population was developed by the authors and used tocollect data for this study.

METHOD

This study was included in the protocol of the EuropeanUnion’s POMONA II project’s “Health Indicators for People withIntellectual Disabilities” (Brehmer, 2008). The aim of POMONAII was to test a set of 18 health indicators for adults with ID in 14European countries using a common POMONA questionnaire.The health indicators were developed in the previous POMONAI study and were structured in the following four domains (VanSchrojenstein Lantman-de Valk, Linehan, Kerr, & Noonan-Walsh,2007): health status (e.g., epilepsy, mobility, sensory and bodymass index (BMI)); health systems (e.g., health check and healthpromotion); health determinants (e.g., physical activity and chal-lenging behavior); and health demographics (e.g., daily occupa-tion and income). As the participant members of the POMONAII study were free to extend the protocol with additional researchareas, the authors undertook to examine frailty using a speciallydesigned questionnaire.

Sampling and Participants

The sampling procedure of the POMONA II project aimed atcreating equivalent group sizes with respect to intensity ofsupport (disability level), age, sex, and accommodation setting(with an overall total of 80 subjects) in order to test reliability andfeasibility of the POMONA II protocol for various subgroups ofpeople with ID. However, the study of frailty required an amend-ment of the Austrian sampling procedure in order to fulfill majorcriteria for representativeness (Brehmer, Zeilinger, & Weber,2008). Thus, a total number of 204 people with ID from eighthealth areas in Austria (among them are Vienna, Waldviertel andWeinviertel) participated in the study. Usable data were receivedfrom 190 adults. The Austrian POMONA sample was consideredrepresentative of the Austrian ID population with respect to theseparameters (age, living and geographic setting, and capacity).Their age range was 18–76 (the floor was set by the POMONA IIproject) with a mean age of 41 years. Some 60% (n = 114) residedin an institution or a group home. The balance (40%; n = 76)either lived alone or with their family. With respect to geographiclocation, 67.4% resided in an urbanized area and 32.6% resided ina rural area. With respect to intensity of support (i.e., level ofdisability), 77.9% were able to speak for themselves during theinterview, showed characteristics for independent living, and hadlow needs of support; 22.1% were nonverbal, showed prominentcharacteristics for dependency, and had high needs of support(level of disability was not objectively measured in the POMONAII project and institutional records showed to be of little reliabilityin this regard). There was no preselection for sex, as an equaldistribution was expected. Our sample resulted in 98 men and 92women (Table 1).

Procedures and Data Collection

Once the POMONA II protocol was accepted by the Univer-sity of Vienna’s Ethics Board, queries were sent to 25 Austrianservice and support provider organizations located in Vienna andLower Austria asking whether they would help the authors byenabling some of their clientele to participate in the study. Fifteenof these service provider organizations agreed to be part of theproject and to help identify study subjects. The participating pro-viders were asked to nominate adult clients who met our studycriteria, inform them about the study, and then help the authorssolicit their voluntary participation. Once potential subjects wereidentified, they were queried by the staff at the provider organi-zations as to their willingness to participate in the study and, ifagreeable, introduced to the study’s interviewers. The interview-ers were eight graduate and postgraduate psychology students atthe University of Vienna, most of them with prior front line staffexperience with ID provider organizations. They were speciallytrained for the POMONA II interviews by the authors, with spe-cific attention given to procedures and competences for establish-ing informed consent and in extracting data during interviews.

In a first face-to-face meeting, interviewers explained thebackground, aims, and contents of the project to the people withID, their support persons, and their legal guardians. The inter-viewers also informed everyone by means of an “easy-to-read”informational letter about anonymity and participant’s rights

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B. Brehmer and G. Weber • Frailty and Intellectual Disabilities

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(i.e., they could withdraw at any time of the interview, have abreak during the interviews, refuse to answer, and be supportedby a personal assistant). In addition, the persons with ID had theright to define the time and place for the interviews. As thePOMONA II protocol contained self-reported and third-partydata (i.e., information from the primary carer or a familymember), participants and their legal guardians were also askedto give consent for this procedure. Health information aboutnonverbal participants was obtained only through third parties.The consent procedural part of the interview ended with anagreement on the date and time for the formal study interview.The average formal study interview duration was 1 h for personswith ID, with an additional hour allocated for collecting datafrom third parties. Data were collected by the eight interviewersover a year (from November 2006 to November 2007).

Assessment and Instruments

The development of the VFQ-ID, a frailty measure, was basedon in-depth analysis of approximately 200 published articles onfrailty, some mentioning Rockwood’s criteria or using Fried’sdefinition. These two frameworks were assumed to be mostusable for studying the frailty syndrome in the population withID. The analysis suggested the development of a new assessmenttool for several reasons: (1) there was significant heterogeneity offrailty measurement strategies because of a lack of acceptedoperational definitions; (2) no instrument fulfilled Rockwood’scriteria; (3) instruments that could assess “multisystemic impair-ments” were lacking; (4) most instruments included only physicalsymptoms, and only rarely were cognitive or psychological healthoutcomes considered (only one measurement (Schuurmans,Steverink, & Lindenberg, 2004) included social factors); and (5)all instruments were constructed to measure the status quo andwere used in longitudinal studies to evaluate negative healthchanges. Given this, it was decided to construct a unique frailtyquestionnaire that would be useful in assessing change. Further,as the instrument needed to be designed to gather information onfrailty as perceived by people with ID, or as viewed by third parties,

objective performance measurements were not included. Thisallowed screening for frailty by nonprofessionals. In addition, thenew questionnaire needed to fulfill two extra requirements: itneeded to include criteria that could be operationalized and itneeded to include variables that were reported in prior research todescribe and assess frailty.

Operationalizing frailty Consistent with the literature analysis,three of the five Rockwood criteria (i.e., multisystemic instability,change over time, and association with an increased risk ofadverse outcomes) can be detected as central when assessingfrailty. Frailty has an unstable influence on four different systems:physical (e.g., washing and eating), psychological (e.g., memoryand exhaustion), social (e.g., contact to family and friends), andcognitive (e.g., handling money). The criterion “change overtime” affects the wording of the items. Typical items would be“Has your vision changed?” “Did it get worse?” and “Since whendid it get worse?” This response format considered that peoplewith severe or profound disabilities might experience restrictionsin one or more areas, so that there would be no indicator forage-related frailty. For example, if a person has been dependenton another person all of his or her life with respect to eating, thiscan be coded with “no change—always needed help.” As anexample of how one can follow the course of frailty over time, wehave included the illustrative example in Table 2.

Frailty symptoms to be included in the questionnaire To developthe questionnaire, first, all of the variables that had been pre-sented in previous frailty research articles were grouped into fourdomains: physical, psychological, cognitive, and social. Then, thelists with a total of 67 items were presented to 42 multi-professional experts (general physicians, geriatricians, clinicalpsychologists, and educational scientists with experience in ID)who were instructed to detect those items that were the mostimportant ones for the onset and development of frailty, and putthem in a numerical ranking (with “1” being the most importantitem for the development of frailty). What we found from thisprocess was that there was a strong agreement about the impor-tance of ADL when assessing the physical domain. All of the

TABLE 1Sample

Low intensity of support/mild to moderatedisability (n = 148)

High intensity of support/severe to profounddisability (n = 42)

Urban (n = 99) Rural (n = 49) Urban (n = 29) Rural (n = 13)

Family/alone(n = 43)

Institution(n = 56)

Family/alone(n = 17)

Institution(n = 32)

Family/alone(n = 6)

Institution(n = 23)

Family/alone(n = 8)

Institution(n = 5)

18–29 13 11 4 6 3 6 5 230–39 10 12 4 6 1 5 2 240–49 11 16 5 7 1 6 1 150–59 4 9 2 7 1 4 0 060+ 5 8 2 6 0 2 0 0



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experts considered those variables to be the most important ones.This is consistent with studies by Mitnitski, Song, and Rockwood(2004), Morley et al. (2002), and Mühlberg and Sieber (2004). Inaddition, our physician experts suggested including the item“incontinence.” Half of the experts (n = 23) grouped the IADL inthe cognitive domain, although, for some items also, good physi-cal health is necessary (e.g., washing clothes). Psychological vari-ables, such as depression and anxiety, are seen by all experts asfundamental for studying frailty. Social variables were reducedfrom 11 to only 4 items by the experts: family, friends, work, andmembership in a club or an association. Also, the four domainswere ranked by the experts, and the physical domain was deemedto be of highest importance, with psychological second, cognitivethird, and the social domain fourth (of least importance whenstudying frailty).

Based on the experts’ rankings, the original list of items wasreduced to 33. Those variables that were deleted were found to beof less or no importance for the onset and development of frailty.The final 33 items, also consistent with those most frequentlyused in previous research (e.g., Schuurmans et al., 2004), areshown in Table 3.

Primarily, based on Rockwood’s multisystemic frailtyconcept, our work used a twofold frailty criterion: (1) negativehealth outcomes in three or four domains according to the Rock-wood criterion “multisystemic impairment”; and (2) a minimumof six negative health outcomes in accord with Steverink, Slaets,Schuurmans, and Van Lis’ (2001) multisystemic frailty criteriaas suggested in the “Groningen Frailty Indicator” (Schuurmanset al., 2004). The cutoff in our study was set to 6 and above, out ofa maximum score of 33. This second criterion was used to ensurethat in this cross-sectional study, short-term and minor negativehealth changes such as those resulting from an accident and towhich people generally adapt would not lead to a frailty coding.

The structure of the entire interview tool The 33 items of theVFQ-ID were thematically integrated into the POMONA IIprotocol (see Table 4). Some frailty questions were put in theself-report part, and others were included in the third-party

assessment part. This pragmatic “study within the study”approach allowed an economical data collection procedure with asubstantial reduction of respondents’ load. The POMONA II pro-tocol included two well-established screening instruments: thePAS-ADD screening (Moss, 2002) and the Aberrant BehaviorChecklist (ABC; Aman & Singh, 1994).

RESULTS

First, psychometric properties of the four frailty domains ofthe VFQ-ID, including factor analysis, will be presented. Second,the frail sample and domains are characterized, and frailty asassessed will be discussed. It is important to note that all frailtyvariables were coded in a dichotomous way, and of all the socio-demographic variables (e.g., sex and accommodation situation),only the variable “age” is a metric variable and normallydistributed—therefore, when testing hypotheses, nonparametrictests were used.

Internal Consistency and Factor Analysis of the VFQ-ID

In the first step, the VFQ-ID’s internal consistency values wereanalyzed, with outcomes leading to item adaptation. This step is aprerequisite for a subsequent solid validation and reliability study.Cronbach’s alpha was computed for the 33 frailty variables,showing an overall satisfying value of 0.803. However, 14 itemsshowed critical values, characterized by low adjusted item–scalecorrelations (low correlation with the overall VFQ-ID content,with values below 0.30; see Table 5). The critical items were allself-reported items, except for one (including the entire socialdomain, decreased physical strength, mobility, vision, andhearing). The other items were falls and fear of falling, increasedmedication, and three more psychological items (nervousness,sadness, and other changes). Statistical analysis revealed third-party data to be more reliable, confirming the assumption of

TABLE 2Kathy O.—a case example

Background: Kathy O. is a 67-year-old woman, who lives in a group home with 12 other people on the campus of a largeinstitutional setting. The etiology of her moderate intellectual disability is unspecific. Kathy relied on assistance during theinterview. Her medical history shows high blood pressure, migraine, diabetes, and rheumatism. The PAS-ADD indicatessymptoms of affective problems, and Kathy’s medication contains a serotonin re-uptake inhibitor. She is obese (BMI 41).

Kathy’s frailty history: Eighteen years ago, Kathy had to retire, because her sheltered workshop was designed only for people withID less than age 50 only. She described this event as traumatic. Ten years ago, her vision and her mobility became worse. Morethan 5 years ago, a general health decline started. Kathy felt weaker and had to use a cane to help her walk. Her carer says thatshe was not able to go shopping on her own since then. He also mentions that the problem of incontinence has emerged. Hermedication has been increased and her psychological well-being has declined. She has become more exhausted, depressed, andhas felt more anxious about her health condition. Two years ago, she fell for the first time and could not get up on her own.Since then, Kathy has become more and more anxious about falling and hurting herself. She avoids stairs and refuses to leave thehouse if the weather is bad (e.g., when it snows). Both Kathy and her carer name problems with washing and dressing herself,but they cannot provide an exact date for the onset of those negative changes.

BMI, body mass index; PAS-ADD, Psychiatric Assessment Schedules for Adults with Developmental Disabilities.



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substantial psychometric differences between those parts of theinstrument that were assessed by different respondent groups.

Especially critical is the exclusion of the item “falls,” because ofinadequate psychometric properties. However, in many studies,the item falls is seen as one of the core frailty items in the genericpopulation (e.g., Morley et al., 2002; Mühlberg & Sieber, 2004).After exclusion of inappropriate items (see Table 5), Cronbach’salpha rose to a value of 0.854, and Guttman’s split half reliability

was of similar satisfaction with a value of 0.72. An exploratoryfactor analysis, excluding items with reliability value below 0.30,explained a total variance of 59.81% resulting to three factors.The first factor represented the physical domain, including allADL items. The second component contained all IADL items.Those variables also were positively related to the first factor,which is not surprising. The third factor included all mentalhealth and psychological items.

TABLE 3Frailty domains and variables

Frailty domains Frailty variables

Physical domain(16 items)

• Decrease of physical strength, vision, hearing, mobility• Difficulties in ADL (washing, eating, transfers, dressing, using the toilet)• Increased medication, unintended loss of weight, loss of grip strength, falls, incontinence, use of walking

frame• General health decline

Psychological domain(6 items)

• Increase of exhaustion, nervousness, and anxiety, sadness, other psychological changes• Decrease of memory• Fear of falling

Cognitive domain(7 items)

Difficulties in IADL• Household chores (two items: complex chores like cleaning windows; easy chores like dusting)• Shopping• Using money, telephone• Preparing meals, medication use

Social domain(4 items)

Negative changes (e.g., reduction) in• Work• Contacts with friends• Contacts with family members• Participation in a club/association

ADL, activities of daily living; IADL, instrumental activities of daily living.

TABLE 4Structure of the research instrument

Content Answered by

Part 1 Sociodemographic details (age, gender, living situation and area, etc.) anddescription of interview situation

Interviewer, person with ID or third party,when person with ID is nonverbal

Part 2 (1) POMONA II questions(e.g., finances, physical health)(2) Frailty questions (9 items)

• Some items of the physical domain (e.g., strength, balance)• The entire social domain (e.g., work, family, and friends)

Person with ID or third party, whenperson with ID is nonverbal

Part 3 (1) POMONA II questions (e.g., ADL, medication list) including PAS-ADDand ABC

(2) Frailty questions (14 items)• Some items of the physical domain (e.g., ADL items, falls)• The entire cognitive domain (all IADL items)• The entire psychological domain (e.g., exhaustion, memory)

Third party

ABC, Aberrant Behavior Checklist; ADL, activities of daily living; IADL, instrumental activities of daily living; PAS-ADD, Psychiatric Assessment Schedules forAdults with Developmental Disabilities.



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Characteristics of the Frail Sample

Data presented in this section are based on the total item setof the VFQ-ID so as to develop a more profound review of thetheoretical relevance of the VFQ-ID items. Altogether, 17 subjects(9%) fulfilled both frailty criteria (see Table 6). For the generalpopulation, Ostir, Ottenbacher, and Markides (2004) estimated10–25% of the population age 65 and older to be frail. Consider-ing that life expectancy is approximately 5–15 years lower forpeople with ID (depending on the severity of the ID and itsetiology; Bittles et al., 2002), the frailty prevalence for people with

ID over 50 years in the present study’s sample and is at 27%, andis thus quite similar to the one reported for the general popula-tion. The median age in the frail sample was 61, whereas nonfrailpersons were significantly younger with a median age of 39(Spearman’s rho; p < 0.001). Thus, Rockwood’s criterion, “asso-ciation with aging,” could be confirmed for people with ID.

With respect to the level of disability, being determinedthrough appraisal by third parties (front line staff and the inter-viewer), the frail population included more persons with mild ormoderate ID (82%; n = 14). The fact that only three people withsevere ID were coded as frail (median age 56, with two being olderthan 50) can be seen as a strong support for disability and frailtybeing differing constructs. With respect to sex and living situation,no statistically significant differences could be observed betweenthe frail and nonfrail subgroups. Frail people with ID were locatedmore often in institutional settings (65%) than living with theirfamily or living alone (35%), and more often in urban regions(53%) rather than rural areas (47%). Some researchers (e.g., Friedet al., 2001) reported higher frailty prevalence in women than menin the general population—a result not replicated in the presentstudy, although a trend could be detected: women with ID (frail53% vs. nonfrail 48%) were more frequently considered frail thanwere men (frail 47% vs. nonfrail 52%).

Persons with Beginning Frailty Symptoms

Twenty-two persons (12%) with ID fulfill one of the twofrailty criteria (see Table 7) and therefore were coded as personswith “possible frailty onset.” Out of these, 11 scored in three ormore domains; 11 others fulfilled the second criterion. Like thefrail sample, this sample was older (median age 45.5) than thenonfrail sample (median age 39.5). Seven persons with possiblefrailty onset needed substantial assistance during the interview.The majority of the “onset group” were women (13 of 22), and 16out of the 22 detected persons were living in institutionalizedsettings. To conclude, the total sample of 190 persons with IDincluded 9% of frail persons and another 12% showing symp-toms of “possible frailty onset,” with the vast majority of thoseconsidered frail being age 50 or older.

Description of the Four Frailty Domains

This section illustrates the most important and frequent frailtyvariables detected in this sample. Differences between the frail andnonfrail groups are based on the Mann and Whitney U-tests, andresults have to be viewed critically because of the restrictionslinked to small samples. Despite this limitation, these findingsallow an insight in the phenomenon of frailty in people with ID.

Physical domain Not surprisingly, the physical condition of thefrail sample could be characterized as quite fragile and weak. Allfrail participants experienced negative changes in this domain—on average, they mentioned six. Fourteen frail persons (82%)named a general health decline and another 11 (65%) named anincreased need for medication. Of the frail persons, eight (47%)described a loss of their physical strength and seven (41%)described a decreasing mobility and lessening vision abilities.Falls,

TABLE 5Corrected item–total correlations of items of the VFQ-ID

Item content

Correcteditem–total

correlationa

Answeredby

Decreased physical strength 0.250 Self-reportDecline in vision 0.102 Self-reportDecline in hearing 0.282 Self-reportDecline in mobility 0.230 Self-reportGeneral health decline 0.325 Self-reportADL (washing) 0.562 Third partyADL (eating) 0.508 Third partyADL (transfers) 0.494 Third partyADL (dressing) 0.562 Third partyADL (using the toilet) 0.547 Third partyIncreased medication 0.181 Third partyLoss of weight 0.375 Third partyDecreased grip strength 0.354 Third partyFalls 0.068 Third partyIncontinence 0.480 Third partyUse of walking frame 0.529 Third partyExhaustion 0.358 Third partyMemory 0.320 Third partyNervousness and anxiety 0.182 Third partySadness 0.142 Third partyOther psychological changes 0.226 Third partyFear of falling -0.014 Third partyIADL (easy household chores) 0.508 Third partyIADL (complex household chores) 0.376 Third partyIADL (shopping) 0.464 Third partyIADL (using money) 0.466 Third partyIADL (telephone) 0.351 Third partyIADL (preparing meals) 0.384 Third partyIADL (medication use) 0.405 Third partyWork -0.135 Self-reportFriends 0.121 Self-reportFamily 0.202 Self-reportMember of a club/association 0.069 Self-report

aThe bold values highlight the 14 critical items.ADL, activities of daily living; IADL, instrumental activities of daily living;VFQ-ID, Vienna Frailty Questionnaire for People with Intellectual Disability.



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TABLE 6Characteristics of frail persons

Personcode

Criterion 1: numberof frailty domains

Criterion 2: numberof negative changes Age Sex

Assisted duringthe interview Living situation

9 3 7 45 Female Yes Family10 3 8 45 Female No Family25 4 14 49 Male No Institution29 3 8 58 Female No Institution31 3 7 61 Female No Institution33 4 10 67 Female Yes Institution35 4 10 76 Female No Institution61 4 6 60 Male No Alone62 3 6 66 Male No Alone63 3 6 66 Male No Alone64 4 7 62 Female No With boyfriend84 3 7 41 Male No Institution85 4 9 43 Male No Institution

104 4 19 58 Male No Institution110 4 6 65 Male No Institution149 3 11 61 Female Yes Institution205 3 10 63 Female No Institution

TABLE 7“Beginning frailty”: characteristics of persons with one fulfilled criterion

Personcode

Criterion 1: numberof frailty domains

Criterion 2: numberof negative changes Age Sex

Assisted duringthe interview

Downsyndrome

7 3 3 38 Male No No11 1 9 46 Male No No19 3 4 36 Female No No30 3 5 59 Female No No32 2 6 66 Female No No43 2 8 28 Male No No83 3 4 41 Female No No89 2 7 43 Female No No94 3 5 46 Male No No98 2 8 49 Male No No99 3 4 53 Male No Yes

107 3 3 59 Female No Yes112 2 7 70 Female No No133 2 8 37 Female Yes No136 2 8 44 Female Yes No138 3 4 48 Male Yes No156 1 6 36 Female Yes No208 3 3 21 Male No No210 3 5 28 Male No No232 3 3 45 Female Yes No234 2 12 66 Female Yes No235 2 6 57 Female Yes No



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with the person being unable to get up without assistance (seen asa prominent indicator uncovering the frailty process), were onlyexperienced by six persons (35%) in our sample. Further, fivepersons (29%) of this frail group already had prior problems withwashing and dressing, and reported a reduced grip strength, as wellas incontinence. Some of the frail subjects (24%; n = 4) mentionedthat they had unintentionally lost weight and frequently neededthe support of a walker. Frail subjects showed higher figures offragile health status compared with the nonfrail subjects. Onaverage, our frail subjects reported three conditions, with thefollowing age-related conditions being significantly more frequentfor this group according to the Mann and Whitney U-tests: highblood pressure (p = 0.043), diabetes and migraine (p < 0.001),rheumatism (p = 0.049), and constipation and cataract (p =0.013). Eight persons in the frail sample (47%) complained abouthigh blood pressure. Diabetes, migraine, rheumatism, and con-stipation and cataract were mentioned by six persons (35%).

The mean BMI of the frail subgroup (29.92 BMI mean; range:16–46), though higher, did not differ statistically significantlyfrom the nonfrail group (26.94 BMI mean; range: 11–62).However, high blood pressure did not positively correlate with theweight of the frail persons with ID. A total of seven frail subjects(41%) were overweight (fitting the criteria of obesity), with a BMIover 30. Only one frail person was underweight.

The literature on frailty for the general population is impre-cise on the impact of body weight. Most researchers (e.g., Friedet al., 2001) see “weight loss” as a fundamental criterion. Somestudies (e.g., Cawthon et al., 2007; Chin A Paw, Dekker, Feskens,Schouten, & Kromhout, 1999) suggest that frail persons have alower BMI compared with nonfrail persons. Further research isneeded to explore whether this difference between the genericand the ID population is typical.

Psychological domain All frail subjects were characterized by adecline in positive psychological resources. On average, threenegative psychological changes or outcomes were reported orassessed. The majority of the frail persons (n = 10; 59%) weredescribed as getting exhausted more easily during the last years.For a total of 47% (n = 8), memory difficulties and nervous oranxious behavior were more frequently reported than in the non-frail group. Further, nearly half of the frail sample (47%; n = 8)was characterized by additional mental health problems (e.g.,anger and aggressive behavior), and 35% (n = 6) were perceivedas presently more depressed or sad than in the past years. Fear offalling was mentioned by many frail persons with ID (41%;n = 7), and they reported changed walking habits (e.g., use of awalker and avoidance of stairs) because of their fear. However,only 35% (n = 6) of those being afraid of falls already had expe-rienced a fall. Typical for this frail population with ID was theawareness of unsteadiness in their walking ability or bodybalance. Therefore, not only the fact of an actual fall but also theawareness of reduced mobility abilities resulted in fear andchanges of mobility lifestyle.

Most frail persons (n = 12) showed no signs of psychologicaldisorders on the PAS-ADD (70.6%) and no signs of behavioralproblems (88.2%) on the ABC. They were more likely to takeprescribed psychotropic medications. On the one hand, it cannotbe ruled out that those frail persons may show a good adjustmentto their mental health problems because of effective medication.

On the other hand, frail persons may be more likely to be over-medicated with psychotropic medications, with negative sideeffects of this overmedication affecting mobility abilities. Thisissue should be specifically addressed in future research.

Six (35%) of the frail persons (termed persons A–F) fit thecriteria for mental health pathologies and/or behavioral problemsaccording to the PAS-ADD screening and/or the ABC. Weobserved that person A was noted to have affective disorder, psy-chosis, irritation, and inappropriate speech; person B was notedto have affective disorder and possible organic condition; personC was noted to have affective disorder; person D was noted tohave psychosis; person E was noted to have a possible organiccondition; and person F was noted to have inappropriate speech.Compared with the nonfrail group, subjects detected as frail weremore frequently rated as irritated (U-test; p = 0.045) and showinghyperactivity (U-test; p = 0.014) as per the ABC and the PAS-ADD. A significantly higher frequency was observed for “possibleorganic condition” (U-test; p = 0.005), an unsurprising result asthis category is known to be age related.

Cognitive domain Five persons of the frail subgroup showed nonegative cognitive changes. The remaining majority of 12 (71%)experienced changes in two cognitive abilities, on average. Themost frequently reported changes were that 50% (n = 6) were nolonger able to perform complex household chores independently,42% (n = 5) were perceived to no longer be able to shop alone, and33% (n = 4) were in need of direct support when handling money.

Social domain Four of the frail persons reported no negativechanges in their social life. The vast majority of 13 (76%) men-tioned at least one significant change in this area, with 69%(n = 9) of the frail sample reporting negative changes related totheir work (e.g., working fewer hours because of a decreased stateof health). About one third mentioned less frequent contact withfriends (46%; n = 6) and family members (38%; n = 5). No oneexperienced changes concerning their activities in social clubs orother social activities. Maybe this variable was too abstract forpeople with ID or interviewers used improper examples.

DISCUSSION

We observed that all frail adults we interviewed experiencedchanges in physical and psychological domains. Typically, age-related physical diseases and psychological problems were morefrequent in the frail population (e.g., presence of diabetes, cata-ract, and cognitive decline). Future research should clarify themediator function of the variable “age.”Also, frail persons showedto be more frequently adipose. Surprisingly, the fear of falling wasmore frequent than actual falls. The awareness of a general healthdecline showed to be the most important frailty item.

We also need to comment on the study’s limitations, whichinclude a modest sample size, lack of randomness (as we relied onopportunistic population), lack of stratification by demographicvariables, and, possibly, a sample bias that may have not beentruly representative of persons with ID in general from culturalcontexts. Certainly, replication attempts would help confirm orchallenge our findings and improve the construct and definitionof frailty as we have begun to use it.



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With respect to methodology, procedures, and instrumentsused, it can be concluded that self-reported health data collectionis a valuable method to gather information and develop person-based knowledge. However, major improvements are required,such as the definition of areas of importance from a user’s per-spective, the wording of items, and the interviewing techniquesthat need to be in easy-to-understand language. Based on theexperience of the present study, the VFQ-ID should be revisedwith the participation of self-advocates, with special attention tobe given to the social domain and to innovative strategies whenassessing temporal relations in the population with ID. Fromthese efforts, improvements in internal consistency are expected.Reliability (internal consistency) of this first VFQ-ID version wasgood, and the factor structure is promising. In a next step, validityand reproducibility should be explored.

The findings also revealed that frailty and disability are twodifferent variables and that people with ID can additionallydevelop frailty, which is typically associated with the agingprocess. However, the impact of the disability level and/or thedisability etiology on the frailty condition in later life needs clari-fication in many areas. Furthermore, it remains unclear whetherfrailty of persons with a severe or profound ID is characterized bya faster developmental process, and thus progressing in a differentway compared with the frailty of persons with a mild or moderateID. For better understanding of the interaction between lifelongID and the frailty syndrome, longitudinal research is recom-mended, which would, in addition, allow focusing on frailtyissues from a developmental perspective.

ACKNOWLEDGMENTS

The authors would like to acknowledge the contributions tothis study and commitment of Maria Asenbaum, ClaudiaOppenauer, and Elisabeth Zeilinger, research members at theUniversity of Vienna’s Faculty of Psychology. In addition, theauthors want to thank all of the participants of the study andthose supporting the participants before, during, and after theinterviews. The authors are grateful for the support and coopera-tion offered by the following Austrian disability agencies:Atempo, Auftakt, Behindertenombudsmann, Caritas ErzdiazöseWien, Caritas Erzdiazöse St. Pölten, Förderzentrum YBBS an derDonau, GIN, HABIT Haus der Barmherzigkeit, Jugend Am Werk,Kolping Wohnhaus Waidhofen/Thaya, KOMIT, Lebenshilfe Nied-erösterreich, Lebenshilfe Wien, Österreichische Rett SyndromGesellschaft, and Wiener Sozialdienste.

The POMONA II project was funded by the European Com-munity through the General Directorate of Health and ConsumerProtection under the grant number 2004130. The POMONA IIproject was coordinated by Professor Patricia Walsh, UniversityCollege of Dublin. For additional information on the POMONAproject see http://www.pomonaproject.org.

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