Impact of Dementia-derived Nonpharmacological Intervention Procedures on Cognition and Behavior in Older Adults With Intellectual Disabilities: A 3-year Follow-up Study

Impact of Dementia-derived NonpharmacologicalIntervention Procedures on Cognition and Behaviorin Older Adults With Intellectual Disabilities:A 3-year Follow-up Studyjppi_344 92..102

Luc P. De Vreese*, Ulrico Mantesso†, Elisa De Bastiani†, Elisabeth Weger†, Annachiara C. Marangoni†, and Tiziano Gomiero†

*Department of Primary Care, Psychogeriatric Service, Local Health District of Modena, Modena; and †ANFFAS Trentino Onlus,Trento, Italy

Abstract Dementia appears at a higher rate among some adults with intellectual disabilities (ID) and this potentially poses a greaterrisk of nursing home admission. Yet, to date, there is no evidence on the efficacy of general dementia-derived environment-,personnel-, and patient-oriented intervention strategies in delaying onset of dementia or in slowing down its rate of progression inthis population. To investigate the feasibility and efficacy of a multicomponent nonpharmacological approach, the authors studied asample of 14 adults with worsening cognition and everyday functioning who were no longer manageable by their family or staff inday centers or group homes, and who were relocated in a model special care unit (SCU) designed to proactively accommodate theneeds of people with ID and dementia. Baseline level and rate of decline across a 3-year period were assessed by means of theDementia Questionnaire for Persons with Intellectual Disabilities and compared to two control groups not in dementia-capableprograms matched for age, sex, and severity of ID. After 3 years, the authors found some improvement in cognition and stabilizationin everyday functioning and behaviors in the SCU residents and a worsening in the control groups. The authors noted that enrollmentin a dementia-capable program facilitated daily practice of residents’ residual skills and abilities, enhancing their memory and verbalcommunication, that the prosthetic environment contributed to activity maintenance and appropriate intellectual challenges, andthat the greater participation on an individual level added to the skill maintenance. Although the interpretation of these positivefindings is not straightforward, they confirm the validity of this “in-place progression” model and provide a platform for continuingprogress in person-centered services and care for aging persons with ID.

Keywords: dementia, Down syndrome, intellectual disabilities, person-centered, special care units

INTRODUCTION

Some adults with intellectual disabilities (ID), in particularthose with Down syndrome (DS), are at an increased risk ofdementia (Cooper, 1997; Coppus et al., 2008; Janicki & Dalton,2000; Strydom, Livingston, King, & Hassiotis, 2007; Strydomet al., 2010; Zigman, Schupf, Devenny, Schubert, & Silverman,2004). Dementia among adults with DS is presumed to be due toAlzheimer’s disease (AD) (i.e., dementia of the Alzheimer’s type(DAT); Prasher, 2005) and consequent to a long-life overexpres-sion of the amyloid-beta protein precursor, whose gene is onchromosome 21. Also, among adults with other types of ID, DATappears to be the most prevalent form of progressive dementia(Strydom et al., 2009; Zigman et al., 2004).

Although virtually all adults with DS over the age of 40 havesufficient neuropathology for a histological diagnosis of AD, asmall subset of adults with DS never develop the signs and symp-toms of DAT, even in the presence of anterograde and retrogradeepisodic amnesia and executive dysfunctions, thought to be aprodromal (preclinical) phase of DAT (Ball et al., 2004; Holland,Hon, Huppert, Sevens, & Watson, 1998). A similar scenario in thegeneral aging population occurs where some persons functionnormally despite significant neuropathology (Desai, Grossberg, &Chibnall, 2010; Hulette et al., 1998) or manifest domain-specific(amnesic or non amnesic) or multiple domain deficits withoutprogressing to AD (Petersen, 2004).

In the general population, this discordance between theabsence of clinical decline and Alzheimer’s neuropathology hasbeen explained in terms of a reserve capacity hypothesis wherethere are individual differences in the ability to more efficientlyuse brain networks or to recruit alternative ones in the presence ofa progressively accumulating neuropathology (Stern, 2009; Thal,2006). Recent in vivo imaging studies suggest molecular, cellular,

Received June 3, 2011; accepted March 26, 2012Correspondence: Tiziano Gomiero, ANFFAS Trentino Onlus, ViaUnterweger, 6 38121, Trento, Italy. Tel: +39 04 6140 7511;Fax: +39 04 6140 7500; E-mail: [email protected]

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Journal of Policy and Practice in Intellectual DisabilitiesVolume 9 Number 2 pp 92–102 June 2012

© 2012 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

and structural compensatory mechanisms in vulnerable brainregions of adults with DS prior to the development of DAT. Thisis consistent with the concept of a higher pathological thresholdfor function decline that allows neurons to function relativelynormally despite extensive Alzheimer’s pathology (Haier, Head,Head, & Lott, 2008; Head, Lott, Patterson, Doran, & Haier, 2007).Although dementia in adults with ID (other than DS) may notbe exactly the same in origin or in sequence of progression asthat which develops among adults with DS, similar compensationmechanisms for pathological brain aging might occur also inthis group.

Intervention studies in animal models have shown that envi-ronmentally enriched conditions, such as structured exercisebeyond that of baseline and multiple environmental stimuli,are able to prevent or reduce aging-related cognitive deficits inrats (Pham, Soderstrom, Winblad, & Mohammed, 1999; Pham,Winblad, Granholm, & Mohammed, 2002; Winocur, 1998), and,in accordance with the functional reserve hypothesis (van Praag,Kempermann, & Cage, 2000), to improve brain structure andfunction through synaptogenesis, neurogenesis, and angiogenesis(Churchill et al., 2002; Fillit et al., 2002).

Given these findings, this has led some workers to give anincreased emphasis on prevention of AD, intended as a reductionof risk for the illness, at least in the general aging population.Some factors that have evidence to support a role in preventionare now recognized (Desai et al., 2010). These include a richsocial network, higher level of cognitive engagement during theirlife span, and greater participation in physical activities (Larson,2010; Williams, Plassman, Burke, Holsinger, & Benjamin, 2010).Devenny et al. (1996) hypothesized that such a focus on preven-tion (or delay of onset) may also apply to older adults with ID (inparticular, adults with DS), and that an active and socially inte-grated lifestyle might postpone the development of dementiadespite significant AD neuropathological changes.

The overexpression of numerous chromosome 21 genes thatproduce proteins critical for neuron and synapse growth, devel-opment and maintenance, and which may be responsible in partfor developmental cognitive deficits, has been hypothesized toparticipate in molecular cascades supporting neuronal compen-sation in the brain of aging adults with DS (Head et al., 2007).The manipulation or up-regulation of these (temporary) com-pensatory responses by means of appropriate psychosocial inter-ventions aimed at improving quality of life and maximizingfunction in the context of existing deficits may have the potentialto promote successful brain aging and ultimately postpone orprevent DAT in adults with DS.

Recent evidence suggests that even in the presence of clini-cally manifest AD, neuronal stimulation through environmentalenrichment in genetically modified mice (Berardi, Braschi,Capsoni, Cattaneo, & Maffei, 2007; Jankowsky et al., 2005) andindividually tailored multicomponent stimulation programs incommunity-dwelling early-stage AD patients mitigate cognitiveand functional deficits (Burgener, Buettner, Beattie, & Rose,2009). Notwithstanding these promising findings, there remains adearth of published research concerning aging people with ID asto the efficacy of nonpharmacological interventions (such asenvironmental modification, program adaptation, and special-ized dementia-derived care) aimed at delaying the conversionfrom mild cognitive impairment to clinically manifest dementia

or at slowing down the rate of progression from early-stage tothe mid-stage dementia—and ultimately at avoiding or at leastdelaying admission of older adults with ID into generic long-termfacilities which may inadvertently decrease their quality of life(Patti, Amble, & Flory, 2010).

In the attempt to deepen the knowledge about the efficacyof nonpharmacological interventions, a study was undertaken toexamine whether specialized environmental and programmaticinterventions may affect the progression of dementia. In thisreport, we present the preliminary results obtained over a 3-yearperiod (from inception to a 3-year follow-up) in an ongoingprospective study, called the DAD Project—for “Down AlzheimerDemenza,” carried out in Trento, Italy (for more details, seehttp://www.validazione.eu/dad/). The main goal of the DADProject was to investigate the feasibility and effectiveness ofperson-centered dementia care and related environmental andpsychosocial interventions provided to a group of adults withID and dementia, which had met with success in long-termcare applications to adults in the general population withAD and other dementia-related deficits (e.g., Brooker, 2004;Cohen-Mansfield, 2000; Finnema, Dreos, Ribbe, & Tilberg, 2000;Livingston, Johnston, Katona, & Lyketsos, 2005).

METHOD

The DAD Project

The study is opportunistic, as it involved a small sample ofadults with ID aged 45 years and older who were originally con-sidered for admission to a generic nursing home because of sus-pected dementia-related cognitive and functional decline withrespect to their previous levels of efficiency and/or the presenta-tion of emotional or behavioral problems no longer considered tobe manageable by their family carers (natural or foster) or by thestaff of day centers they attended or the group homes in whichthey resided. Given the burgeoning number of such adults in theTrento region of Italy, a local parent-based association decided toestablish a specialty dementia care home for adults with ID—afree-standing special care unit (SCU) named “La Meridiana” atone of its major service centers. Thus, these adults (who were injeopardy of being admitted to a local nursing home) were admit-ted to this purpose-built residential home conceptualized as atemporary residential care setting and designed to proactivelyaccommodate their changing needs in the attempt to slow downor manage their dementia-related symptoms. The DAD Projectwas thus composed of the installation of the SCU and the studythat was designed to evaluate it. The DAD Project was almostentirely financed by ANFFAS Trentino Onlus. The financing alsocovered the architectural features (spatial layout, equipment,and furnishings) of the SCU. The SCU is located at the ANFFASTrentino NGO La Meridiana Trento, a building of two floors nearthe center of the city of Trento, Italy.

Ethics Review

The study was approved by the Directory Board of theNational Association of Intellectual and Relational Disabilities of

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the Province of Trento (ANFFAS Trentino Onlus, Protocol no.005932; September 15, 2005) which is one of the major Italianparents associations for people with ID and developmental dis-abilities. Following permissions from the day centers and nursinghomes willing to participate in the DAD Project, explicit verbal,but not written, consent was obtained from those subjects whowere able to consent. Where such consent was not possible, familymembers or guardians provided subjects’ willingness to partici-pate in the project. All the participants were given the opportu-nity to withdraw from the DAD Project at any stage.

Study Population

All the study participants were at least 45 years old at entryto this longitudinal study. All were identified as having an ID;the diagnosis was principally made by medical record reviewand examination of clinical phenotypes. The following exclusioncriteria applied: severe auditory or visual impairment, signifi-cant language disorders, clinically relevant chronic invalidatingorganic or psychiatric comorbidity, and treatment with acetyl-cholinesterase inhibitors or memantine. Level of severity of theirID (intelligence quotient; IQ) was obtained from either historicalrecords (generally from testing using the Stanford–Binet orWisc-R) or via the administration of the Standford–Binet im-mediately before or within 3 months after the start of the DADProject. These administrations were performed by professionalsnot directly involved in the study. IQ values in this study arereported as standardized scores derived from the Stanford–Binet.

Sixty subjects were involved in the DAD Project’s study.Group SCU was the experimental group; the members of thisgroup were 12 residents at the SCU, as well as two adults (age 45+)who attended the co-located day center at the SCU La Meridiana(n = 14). There were two control groups. Group DC (for “DayCare”) was made up of 22 adults with ID who attended a varietyof day centers for people with ID in the province of Trento; theseadults either resided with their family or in group home. GroupNH (for “Nursing Home”) was made up of 24 adults who wereresidents of two nursing home facilities, in the Trento area, withexperience in the care of adults with ID.

Dementia-derived Nonpharmacological Interventions in theSCU La Meridiana

Staff-oriented interventions Before the SCU opened, teammeetings were organized to proactively prepare staff members tocare for the adults residents with dementia. Each staff memberparticipated in an education program of 40 h aimed to improvetheir knowledge about aging and dementia disorders in peoplewith ID and to acquire new competencies for dealing adequatelywith aged adults with ID. Training focused on the principles of“Gentle Care” as posited by Jones (1996) and the person-centeredcare model of Kitwood (1993; 1997), both of which have thepotential to impact dementia progression in terms of cognitivefunction and functional abilities and to control for behavioraland psychological symptoms in the general AD population. TheGentle Care method seeks to arrange an environmental fitbetween the person with dementing illness and the physical space,

the programs, and the significant people with whom the personmust interact, by accommodating and supporting existing levelsof function and development, rather than challenging the personwith dementia to adapt and perform in ways no longer possible.Kitwood’s person-centered care underlines the importance ofconsidering each person’s needs and preferences from a holisticperspective. This includes associated relationships and the impactthat other people, practices, and/or the physical environment mayhave on the individual. This means that carers should respect andvalue the individual as a full member of a (micro)society avoidingstigmatizing behaviors, provide individualized places of care thatare in tune with people’s changing needs, understand the per-spective of the person, and provide a supportive social psychologyin order to help people live a life where they can experiencerelative well-being.

Carers also learned to apply in day-to-day care and recreationalactivities adjuvant dementia-specific care techniques, such as thestimulation-retreat method by Lawton et al. (1998) and the lif-estyle approach by Symard (1999). The former is an interventionprogram that involves informed judgment regarding for whomand when one-to-one additional stimulation (e.g., conversation,reading, music, looking at pictures) is appropriate and when itsopposite, reduced stimulation or retreat, is appropriate.The choiceof a specific type of one-to-one contact is obtained by means ofeach resident’s observable responses in both naturalistic and pre-scribed contexts: when and where does (s)he sit near or distantfrom other residents; what appears to be his(her) response whenothers approach him(her); what can the family or others familiarwith the resident tell the team about earlier-life experiences andindividual preferences. An activity program is then determinedby consensus at the care planning sessions which are the vehiclefor discussion and regular review of the information relevant tothe stimulation-retreat prescription of each resident. Symard’smethod helps establish a daily routine for residents that is familiarand that fills their days with meaningful activities. The first step ofimplementing the lifestyle approach is assessment, that is, collect-ing detailed descriptions of normal routine and habits broken into24-h sections (pre-breakfast, breakfast, post-breakfast, middaymeal, afternoon, late afternoon, evening meal, bedtime, andsleeping habits), food and beverage preferences, leisure activitiesand hobbies, situations where anxiety occurs, and successfulapproaches families or carers have used in the past to calm theperson. Assessment is followed by programming daily routine insuch a way that one activity flows into the next, taking into accountthat participation in activities may vary across individuals andat different times within the same resident. In accordance withthe self-determination theory by Deci and Ryan (2000), these twoadjuvant care techniques emphasize the importance of care tai-lored to the needs and capabilities of persons with dementia andconsideration of the individual’s life context.

In order to guarantee and maintain the transfer of the carers’newly acquired knowledge into practice, psychologists and edu-cationalists sought to improve the staff’s abilities of reflectionand independent problem-solving during quarterly briefingsessions. For instance, the staff were invited to pay attentionto adequate relational styles (interactive regulation) and self-directed regulatory behaviors and, for themselves, learned howto prevent burnout. Further education was also realized throughad hoc brainstorming sessions each of an hour and a half that



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treated emerging problems among the SCU residents (such asagitation-aggression, insomnia and nocturnal wandering ina restraint-free setting, dysphagia, depression, epilepsy, andrecognition of pain).

The two control care settings (DC and NH groups) representgood-quality standard management and care of adults with ID,favoring individualized planning, user-friendly and people-firstlanguage, and prosthetics fitting as much as possible differentdegrees of aging-associated physical disabilities found amongpeople with ID. The staff at the DCs and NHs received standardeducation and training for daily care provision, and just beforethe start of the DAD Project, they acquired only technical knowl-edge about aging and dementia disorders in older ID subjects. Onthe other hand, and like the staff at the SCU, they, too, partici-pated in organized quarterly meetings conducted by psycholo-gists and professional educationists.

The client-to-staff ratio was higher in both the SCU and DCsthan in the two NHs (i.e., 1:3 vs. 1:4), but only NH residents couldcount on a 24-h nurse assistance together with a daily presence ofa NH physician. In the remaining centers, each resident has hisown general practitioner (GP) who may intervene pro re nata.The SCU residents, however, are monitored by a GP who has along-standing expertise in the care of older adults with ID withor without dementia.

Environment-oriented interventions The SCU at La Meridianais a building with a total area of 633 m2 (6,810 sq. ft) distributedon two floors. At the ground floor, there are different spacesdedicated to occupational and recreational activities, a physio-therapeutic bath, a kitchen, a dining room, three bathrooms,and several areas for relaxation and other activities. The first floorcontains a 12-bed unit with three large shared bathrooms andtwo kitchens with adjacent multiple-occupancy communalareas—one of which has access to a safe terrace at the first floorwith low-cut plants and a gazebo (area of 180 m2 (1,937 sq. ft)).In line with the self-regulation model by Deci and Ryan (2000),all spaces are freely used during the day.

As there is currently no gold standard for what constitutes theoptimal milieu of a SCU for dementia patients (Dobrohotoff &Llewellyn-Jones, 2011; Lai, Yeung, Mok, & Chi, 2009), the equip-ment, furniture, and ornamentation of this SCU were chosen soto convey a home-like perception for both the residents and thestaff and to avoid a number of environmental features (e.g., ambi-ence, space, and size) that notoriously cause discomfort and dis-ability, triggering confusion and disruptive behaviors in peopleaffected by dementia (Day, Carreon, & Stump, 2000; Marshall,2001). Consequently, in the initial designs, much attention waspaid to adequate signage, unobstructive safety features, wallcolors, floor covering, air quality, ample natural daylight, andsoft, indirect, and pervasive or full-spectrum lighting avoidingshadows, unsafe transition areas, and uncontrolled glare (Hoskins& Marshall, 2002).

All earlier-described environmental arrangements have alsobeen implemented in the day center on the ground floor of LaMeridiana to meet as much as possible the SCU’s group needs forsafety, security, privacy, competence, and physical and psycho-logical comfort. Architectural features, equipment, and furnish-ings in the control care settings are in compliance with nationaland Trentino’s regional regulations. Notwithstanding, we com-

pared the physical environment of the La Meridiana SCU withthat of the other DCs, group homes, and NHs by means of anobservation scale originally created to investigate facilitators orbarriers that may be present or absent in the home of adultsaffected by AD (Chiogna & Dalprà, 2009). The observation scalewas used by a graduate student in architecture not directlyinvolved in the DAD Project. The scale is composed of threedichotomous subscales that assess the presence or absence ofmeasures or precautions relative to floors, walls, lighting, plants,kitchen/living room, bedrooms, balconies, scales, and elevatorsaimed at reducing motor (64 items), sensory (34 items), andAD-related cognitive (59 items) disabilities.

Other miscellaneous environmental features As the SCU wasconceptualized as a restraint-free care setting, all bedroomshave a camera with a centralized video surveillance system. Thiselectronic surveillance, although impinging a person’s right toprivacy (Niemeijer et al., 2010; Welsh, Hassiotis, O’Mahoney,& Deahl, 2003), facilitates the residents’ freedom of movementat night—in particular for those with nocturnal wandering andinappropriate room intrusions—while enabling the staff to avoidor reduce residents’ fall- or aggression-related injuries.

The use of music has been observed to be a useful therapyfor the care of older people with dementia (Vink, Bruinsma, &Scholten, 2003). Similar to frequent interpersonal contact, musicappears to have a calming effect on the behavior of patientswith dementia, especially when music is made available on anindividual basis (van der Geer, Vink, Schols, & Slaets, 2009). Atthe SCU, a high-skilled certified music therapist was engagedto provide the SCU staff with a 15-h training course followedby three 2-h practice sessions in the use of individuallytailored music for people with mental and cognitive disorders.SCU residents could listen in general or by their own requestto their preferred music during the toileting activities bymeans of an iPod installation in two of the three bathroomsof the SCU.

Animal-assisted therapy has shown positive effects on behav-ior in the general dementia population, although it is unclearwhether resident pet dogs are more effective than visiting ones(Filan & Llewellyn-Jones, 2006). A male cocker spaniel who hadbeen a pet dog was brought in to be with the SCU residents whoare allowed to seek his companionship at any moment of the day.None of these miscellaneous features were present in the controlsettings.

Client-oriented Interventions Similar internal and externalactivities were offered on a regular basis to all the study partici-pants. Among the internal day activities, besides individualgrooming and routine domestic activities, there are daily indi-vidual or group activities, recreational, occupational, and musicactivities, motor rehabilitation sessions, or other physical activi-ties. External activities include shopping, walks, one-day trips,and weekly animal-assisted activities. The NH residents had lesscontact with the local community, but participated in pro-grammed occupational group activities conducted in the resi-dence with the scope to stimulate aggregation and socialization.Participation in activities described earlier was quantified for1 month in terms of frequency and duration (expressed inhours/minutes).



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Outcome Measures

The main outcome of this part of the DAD Project is thecollective rate of decline in cognition, daily functioning, andbehavior of the participants in the study; these were indexedby means of a validated Italian version (De Vreese, Mantesso,Scarazzini, Menegatti, & Gomiero, 2007) of the DementiaQuestionnaire for Persons with Intellectual Disabilities (DementiaQuestionnaire for Persons with Intellectual Disabilities (DMR),(Evenhuis, Kengren, & Eurlings, 2004). The DMR is a 50-iteminformant-based questionnaire with two types of scores: the“Sum of Cognitive Score” (SCS)—those items related to cognitivefunctions (short- and long-term memory, temporal and spatialorientation)—(score range: 0–44) and the “Sum of Social Scores”(SOS)—those items related to social scores (language, activitiesand interest, mood, functional abilities, behavior disorders)—(score range: 0–60). Higher DMR scores represent a higher fre-quency of behaviors that are indicative of cognitive deterioration.The DMR change scores of the SCU group were compared withthose obtained by from the control groups, matching for age, sex,and severity of ID.

The DMR has been administered at baseline and repeatedafter a 3-year interval. The SCS and SOS of the SCU group werecompared to those obtained by the DC and NH groups. We wereunaware of a better way to quantify individual differences in theearliest potential indicators of future dementia for the currentresearch purpose, especially in people with ID. In using the DMR,we noted that it was not used to diagnose dementia, but rather toserve as an index of possible future dementia. As in all longitudi-nal studies, every subject entered the present study presumablyat a different, unknown stage of preclinical dementia (from onlya few years away from a clinical diagnosis to never getting adiagnosis), so the SCS and SOS were judged to be reasonablequantitative indexes.

A secondary outcome of the present study is the number of theDCs’ attendees who were transferred to a NH because of dementia-related increasing assistance needs with or without behavior prob-lems in comparison with the SCU residents over the 3 years.

Data Analysis

The data were analyzed using SPSS for Windows, version15.01 (SPSS Inc., Chicago, IL, USA). Baseline data were analyzedwith chi-squared tests for dichotomous variables and analysesof variance for continuous variables with post hoc Bonferroni’scomparisons. A two-way mixed-design analysis of covariance(ANCOVA) was conducted with dependent variables SCS andSOS and their respective subscores, time point (baseline, 3-yearfollow-up) as the within-subjects factor and group (SCU,DC, NH) as the between-subjects factor, with baseline DMRsub-scores and confounds (age, sex, ID diagnosis and severity,and presence or absence of psychotropic drugs1) as covariates. Anexploratory logistic regression analysis with forward method was

also computed with transfer to a NH vs. “in-place progression” inthe course of the 3-year observation, as dependent variable andbaseline SCS and SOS and the aforementioned confoundingvariables as covariates. Significant differences were defined asp-value <0.05.

Finally, to verify whether changes in the SCS and SOS of eachstudy participant were reliable (i.e., reflected more than a simplefluctuation of the measuring instrument), we computed theJacobson and Truax’s Reliable Change Index (RCI, Jacobson &Truax, 1991) by using standard deviation, square roots, and reli-ability indexes (Beutler & Moleiro, 2006; Maassen, 2004) derivedfrom the data of the Italian validation study of DMR (De Vreeseet al., 2007). RCIs for SCS and SOS were 1.3 and 1.9, respectively.These values were used with a 95% criterion such that an indi-vidual change in the DMR scores greater than these, whetherimprovement or deterioration, would only occur due to an unre-liability of the DMR alone in less than 5% of times when twomeasurements are made on the same individual.

FINDINGS

Study Population

Table 1 illustrates the baseline demographical and clinicalcharacteristics of the study population. No significant differencesamong the three groups were found for age or sex distributions,or actual IQ values, both as continuous values and as distributionof severity level according to the DSM-IV-TR (American Psychi-atric Association, 2000), and SOS. By contrast, the prevalenceof DS and non-DS subjects significantly differed (c2 = 13.7,p < 0.001) among the three groups. As expected, the SCU group’sbaseline SCS score was higher and thus more impaired (F = 4.4,p = 0.02) than those of the control groups, with significantBonferroni’s post hoc differences between the SCU and both theDC (p = 0.02) and NH subjects (p < 0.05). Mean (�SD) baseline“mood” subscores did not differ among the three groups (SCU:5.3 (�2.8); DC: 5.1 (�2.8); NH: 4 (�1.2); F = 1.9, p = 0.16),excluding a “pseudodementia” behind the more impaired SCS ofthe experimental group.

The frequency of psychotropic medication prescribed fordaily use in the last year before follow-up assessment was signifi-cantly higher in non-DS than in DS subjects (c2 = 4.86, p = 0.03),but not among groups (c2 = 3.6, p = 0.16).

Environment-oriented Intervention

A total of 24 observational scales have been compiled: one forthe SCU, one in each of the two NHs and 21 scales for the DCgroup (16 at home with the family or group homes and fiveID-specific DCs). Figure 1 displays the appropriateness of archi-tectural supports to overcome motor, sensory, and AD-relatedcognitive disabilities, expressed in percentages. For the DC group,we computed an average weighted for the number of personsattending the DCs, whereas the percentages for the NH groupare a mean of the two residential settings since there were nostatistically significant differences between them. The SCU had

1In the last year of the study observation, data (yes/no) were collected on theprescription for daily use of psychotropic medications (e.g., mood stabilizers,benzodiazepines, Z-drugs, antidepressants, first and second generation anti-psychotics) alone or in co-medication.



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a significantly more adequate environmental control of the resi-dents’ motor (c2 = 43.8, p < 0.001), sensory (c2 = 15.2, p < 0.001),and AD-related cognitive (c2 = 18.8, p < 0.001) disabilities com-pared to the control settings.

Client-oriented Interventions

There was a very wide individual variation in the frequencyand duration with which people participate in activities in allthree settings impeding us to compute a reliable statistical analy-sis. For illustrative purposes, we present in Figure 2 a 1-monthobservation for 13 out of the 14 SCU subjects.

Primary Outcome Measure

Since there were three deaths across this 3-year period(two DC subjects and one NH resident) before the follow-upassessment, the programmed ANCOVA was computed on 57subjects. The within-subjects contrasts revealed a significantmain time ¥ group interaction effect (F = 9.5, p < 0.001) for theSCS, independently of its baseline score. The form of this inter-action is represented in Figure 3 which shows an improvementin the SCU group and a worsening in the two control groups.Among the confounding variables taken into account in thepresent study, sex (F = 4.2, p < 0.05) and psychotropic medica-tions (F = 5.7, p = 0.02) were found to be significant covariates.

There was a significant interaction between time and groupfor both “short-term memory” (F = 5.9, p < 0.01) and “long-termmemory” SCS subscores (F = 5.7, p < 0.01), but not for the “ori-entation” subscore (F = 2.1, p = 0.13) which in turn showed asignificant time effect (F = 6.8, p = 0.01). Baseline “short-termmemory” (F = 7.7, p < 0.01) and “orientation” (F = 7.2, p = 0.01)scores resulted to be significant covariates. Among the otherconfounds, only the baseline IQ values were found a significantcovariate (F = 6.6, p = 0.02) for the within-subjects changes ofthe “orientation” score across the 3-year period. By contrast,there were no main effects of time (F = 3.6, p = 0.06) and oftime ¥ group interaction (F = 0.8, p = 0.45) for the SOS (seeFigure 4). Significant covariates were baseline SOS (F = 15.5,p < 0.001), psychotropic medication use (F = 6.0, p = 0.02), andIQ values (F = 4.6, p = 0.04). Only the “language” domain of thefive SOS subscores evidenced a significant interaction betweentime and group in favor of the SCU group (F = 3.6, p = 0.04),adjusted for its baseline score and the other confoundsmentioned earlier. Noteworthy, daily use of psychotropic drugs in

TABLE 1Baseline demographic and clinical characteristics of the study sample

SCUn = 14

DCn = 22

NHn = 24

Sex Male 7 11 12(50%) (50%) (50%)

DS Present DS 10 15 5(71.4%) (66.2%) (16.7%)

Age Mean 53.2 55.2 51.9SD (6.9) (7.5) (5.5)

IQ values Mean 29.9 32.7 27.3SD (11.6) (14.8) (13.3)

Level of IQ Category Pr Se Mo Mi Pr Se Mo Mi Pr Se Mo MiN/% 6 4 4 0 8 3 8 3 13 5 4 2

43% 28.5% 28.5% 0 36% 14% 36% 14% 54.2% 20.8% 16.7% 8.3%DMR/SCS Mean 25.4 13.6 15.1

SD (10.9) (14.3) (10.9)DMR/SOS Mean 19.3 16.9 13.9

SD (10.6) (12.4) (8.7)

Pr = Profound (�25); Se = Severe (26–35); Mo = Moderate (36–49); Mi = Mild (�50); SCU = special care unit; DC = day center; NH = nursing home

FIGURE 1

Appropriateness1 of the environment in the three settings.1Based on the questionnaire (Chiogna & Dalprà, 2009).



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the last 12 months before follow-up assessment (F = 9.1, p < 0.01)and the ID diagnosis (DS vs. non-DS) (F = 5.5, p = 0.02) werefound to be statistically significant covariates for the within-subjects change score in the SOS “activities & interest” domain.The former may be probably due to the frequent adverse effects ofpsychotropic use such as emotional and cognitive blunting. Theremaining covariates (age, sex, and actual IQ) never reached astatistical level of significance, except the baseline IQ values forthe within-subject changes in the “behavioral disorders” subscore(F = 6.5, p = 0.01).

Since the prevalence of DS and non-DS subjects resulted signifi-cantly different among the three groups and since adults with DS arenotably at increased risk of dementia compared to non-DS subjects,we conducted the same ANCOVA analysis separately for DS andnon-DS participants.As regards the DS participants, there was againa significant time ¥ group interaction (F = 7.02, p = 0.005) but onlyfor the SCS with none of the confounds as covariates reaching a levelof statistical significance. By contrast, no significant interactionsbetween time and group were found nor for the SCS (F = 1.98,p = 0.163) neither for the SOS (F = 0.19, p = 0.827) in the non-DSsample. Fifty-one (89.5%) and 48 (84.2%) subjects had a RCIgreater than 1.3 and 1.9, respectively, for SCS and SOS, indicatingthat in the majority of the study participants, the observed DMRchange scores were reliable and did not result from a simple fluctua-tion due to repeated measurements.

Secondary Outcome Measure

During this 3-year timeline of the DAD Project, six out of the22 DCs’ attendees moved to a NH because of dementia-relatedmanagement problems, whereas all SCU residents were still living

0 5 10 15 20 25 30

Horse's Assisted Activity

Att. special events in the community or

neirghborhood

Artistic Activity

Shopping (or similar activity)

Walking

Pet Therapy

Training activities for basic autonomies

Employment

Leisures, recreation activities

Music Activities

Home life activities

Physiotherapy

Monthly hours

13

12

11

10

9

8

7

6

5

4

3

2

1

FIGURE 2

A 1-month observation of day-to-day activities done by 13 SCU residents.

FIGURE 3

Mean DMR/SCS obtained by the three study groups across the3-year period.



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in the La Meridiana (c2 = 4.6, p = 0.03). Of interest is that alladults who moved to a NH had DS. Table 2 illustrates their ageand baseline SCS and SOS in comparison with the SCU and otherDC residents who aged in place. Institutionalized subjects weresignificantly older in age (F = 7.6, p < 0.01) and obtained higher(i.e., worse) baseline SOS (F = 7.6, p < 0.01). The differences ofthe baseline IQ values and SCS between the two groups feltshort of statistical significance: F = 3.1, p = 0.08; F = 3.5, p = 0.07,respectively. The planned forward logistic regression analysis pre-dicted with an overall accuracy of 81.6% (c2 = 14.8, p < 0.01) thelikelihood of NH admission with baseline SOS as the only signi-ficant predictor (B = 0.1, SE = 0.06, Wald = 4.6, Exp(B) = 1.1,p = 0.03) over and above the effect of group membership, age, sex,ID diagnosis, IQ values, and baseline SCS.

DISCUSSION

In this 3-year study, we applied a multicomponent interven-tion approach encompassing simultaneously environmental andprofessional aspects, derived from evidenced-based quality carein the general dementia population, to a small experimentalsample of adults with ID who were aged 45 years and older andwho had been considered no longer suitable to attend day centersand/or to continue to reside in their group or family homesbecause of cognitive deterioration and significant behavioralchanges. Instead of being institutionalized in a generic nursinghome, they moved to a specialized dementia care setting withthe aim of postponing the conversion from a prodromal mildcognitive impairment to a clinically manifest dementia or todelay the progression from early stage to more advanced stages ofdementia. The SCU residents were compared to two “usual-care”comparison groups matched for age, sex, and severity of ID. Themembers of one group attended traditional DCs and lived withtheir family or in ID-specific group homes. The other group wascomposed of adults who had already been placed in two genericnursing facilities. The rate of change in cognition, daily function-ing, emotion, and behavior as measured by the DMR (Evenhuiset al., 2004) and the number of ID adults of the DC and SCUgroups who had moved to a NH at the end of the observationperiod were the outcomes to verify feasibility and efficacy of thisprospective study.

The results showed that the SCU residents, despite (early)cognitive deterioration at the initial evaluation, demonstrated asignificant improvement on the DMR/SCS scores across a 3-yearperiod, compared to the control DC and NH groups. A post hocanalysis showed that this significant between-group difference infavor of the SCU residents was present only in the subsample ofadults with DS. This improvement was observed independently ofthe baseline SCS scores and regarded the two memory domainsof the DMR. After 3 years of life in the SCU, the experimentalgroup remained stationary in their daily functioning (basicactivities of daily living, leisure activities, and interests), mood,and behavior, whereas the control group subjects’ SOS scoresoverall worsened. As graphically shown in Figure 4, changesin SOS between initial and follow-up assessment in the SCUgroup were minimal, whereas the control groups’ SOS increased(worsened). This opposite pattern did, however, not reach a

FIGURE 4

Mean DMR/SOS obtained by the three study groups across the3-year period.

TABLE 2Comparison of baseline demographical and clinicalcharacteristics of adults with ID by those placed or not placedin nursing homes (NH) in November 2009

Adults with ID andplacement in NH

Adults with ID and noplacement in NH

n 6 40Age Mean 61.3 53.1

SD (2.7) (7.1)IQ values Mean 23 33.3

SD (19) (11.8)DMR/SCS Mean 27.8 16.3

SD (15.6) (13.4)DMR/SOS Mean 28.8 15.6

SD (15.4) (9.6)



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statistically significant level, except for the verbal communicationabilities, even after controlling for their baseline level.

The multicomponential nature of the DAD Project does notpermit a straightforward interpretation of these positive findings.Also, this study is the first to our knowledge to address the impactof a longitudinal dementia speciality program on cognition, func-tioning, and emotion/behavior in adults with ID with (early)cognitive deterioration. However, a number of plausible explana-tions may be put forward; some of them inspired by data from theresearch literature on nonpharmacological intervention proce-dures in the general dementia population.

First, a person-centered approach, which satisfies basichuman needs of people with dementia and systematicallyavoids stigmatizing behavior of staff (Spector & Orrell, 2010),has revealed significant relationships with relevant outcomesfor the general dementia population, including depression,health, anxiety, self-esteem, personal control, and activitymaintenance, some of which represent enduring and potentiallysignificant factors for long-term outcomes (Moyle, 2010). Wemay therefore surmise that this person-centered approachsystematically applied in the SCU might have facilitated dailypractice of the residents’ residual skills and abilities, enhancingtheir memory and verbal communication abilities. Second,other aspects of autonomy such as self-determination, freedomof choice and self-rule, appropriately balanced against a duty ofcare intended as beneficence (i.e., doing good), and the qualityof relational styles (e.g., interactive regulation, self-directedregulatory behaviors) have all been carefully considered by theSCU staff. This was evident also from a qualitative analysis of a1-month observation of the type and duration of participationin internal and external activities offered to the care receiversin the three settings. Clearly, it was not the type and frequencybut rather its participation at the individual level in the acti-vities which represented a discriminatory aspect among thegroups. Third, the SCU’s proactive environmental modificationsresulted not only to be more dementia-friendly compared tothe other traditional ID care settings, but also more adapted toage-related physical and sensory impairments. The prostheticenvironment of the SCU probably contributed to activitymaintenance of their residents by subjecting them daily toappropriate intellectual challenges. Finally, and although notdirectly investigated, all the earlier outlined differences betweenthe SCU and the other care settings might have increased theSCU personnel’s job satisfaction which is known to result inextra time spent with residents’ care and leisure daily activities,bettering the overall quality of care relation in people with AD(Olanzarán et al., 2010).

Thus, overall, this wide range of accommodations and inter-vention procedures in a person-centered specialized care setting,such as La Meridiana, might have decreased or at least kept lowacross this 3-year observation period residents’ psychologicaldistress which, when chronic or recurrent, is known to bean important risk factor of accelerated cognitive decline anddementia, at least in the general aging population (Desai et al.,2010).

It was noteworthy that none of the SCU residents neededrelocation, whereas six out of the 22 (27%) DC attendees had tobe placed in a traditional nursing facility because of dementia-related care management problems. All six had DS and were older

in age in accord with the literature (Patti et al., 2010). It wouldappear that we, too, observed that cognitive deterioration, even inits early stages, is associated with specific behavioral changes inadults with DS (Adams & Oliver, 2010). As a matter of fact, onlybaseline SOS scores predicted with good accuracy future nursingfacility placement.

Apart from the small sample size, there were other metho-dological limitations of this study. First, the far most difficultproblem facing every prospective study of aging people with IDis that, invariably, subjects may be at a different stage of anypreclinical dementia process at the start of the study and there isno way to precisely determine this staging at present. Thus, thedifferences we observed between care settings may be in partascribed to these stage effects. Second, some of the data werecollected at the start of study (such as the severity of ID) andtherefore the premorbid level of ID could not be controlled forwith standard measures. Yet, severity of ID appears not be asuperior risk factor for dementia (Coppus et al., 2008). Third,the DMR is an informant-based questionnaire, completed bystaff. Both interviewers and interviewees were aware of theliving setting of each subject; hence, a potential observationbias cannot be excluded. Nevertheless, all participants werefollowed longitudinally by the same staff and both interviewersand interviewees were blind to the baseline DMR scores, withinformants’ responses directly entered in electronic format viaa protected gateway to the web site created ad hoc for datagathering from all the sites involved in the DAD Project.Fourth, the living conditions and needs of family caregivers ofthose subjects who were day center participants have not beenaddressed, and, therefore, it is unclear whether potentially con-founding family-related variables might have influenced thecourse of aging-related mental, behavioral, or functional declineduring the 3-year timeline of the study. Finally, cost-relatedmeasures have not been included in this study. There werehowever, some indirect indicators of cost-effectiveness of theDAD Project, such as the hospitalization rate and number oftraumatic falls. SCU residents were admitted to the hospital for17 days against an average of 46 days in the control settings.There were only three falls among the SCU residents duringthe whole 3-year period, whereas the incidence of falls in thecontrol settings was three falls per year.

The provision of daily care in adults with ID with possibleor probable dementia and age-related cognitive decline is knownto be associated with unique carer issues and considerableemotional exhaustion (Lloyd, Kalsy, & Gatherer, 2008). Usually,low staff experience with dementia care, increased staff time tobe spent in caregiving and difficulties in coping with challengingbehavior, and expressions of pessimism about changing thecourse of dementia all explain why many ID services apply theso-called “referral out” model, relocating adults affected bydementia in traditional residential care with a consequent wors-ening of quality of life and quickening of the clinical course ofdementia (Donaldson, 2002; Janicki, Dalton, McCallion, Baxley,& Zendell, 2005).

We hope that these findings will stimulate the disseminationof this “in-place progression” model in other countries, as well asprovide a platform for continuing advances in multicomponentnonpharmacological intervention procedures to improve servicesand care for persons with ID and dementia.



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ACKNOWLEDGMENTS

The authors would like to thank the individuals with ID, theirfamilies, and carers alongside Maria Cioffi Bassi, President ofANFFAS Trentino Onlus, for her continued support throughoutthe duration of the DAD project.

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Impact of Dementia-derived Nonpharmacological Intervention Procedures on Cognition and Behavior in Older Adults With Intellectual Disabilities: A 3-year Follow-up Study