Table 1:Description of primary and secondary outcome measures  

Outcome

Name of measure

Source

Description

Eighteen trials

Family

Residential /Assisted Living/Hospital

Primary outcomes: Care recipient

Patient behaviour

Revised Memory & Behaviour Problem Checklist (RMBPC)

Teri 1992

Assessment of behavioural problems in people with dementia. A 24‐item checklist which provides one total score and 3 sub scores for the following problems: memory (7 items), depression (9 items) and disruption (8) items. Measures caregiver reports of   Incidence (0‐24), Frequency and Reaction (0‐96) to each of the 24 problems. It was developed to measure reports of behavioural concerns by family caregivers in the US.

Frequency:

Farran 2000           

Gitlin 2010 (2 items)               

Teri 2003                            

Teri 2005a                            

Teri 2000                                    

Zarit 1987(non revised version)                    

Incidence:

Gitlin 2003 (disruptive behaviour only)                   

Burgio 2003                                                

Teri 2005b

Rating Scale for Aggressive Behaviour in the Elderly (RAGE)

Patel 1992

Measures aggressive behaviours in the elderly ranging from being uncooperative to physical violence. A 21‐items scale where for 17 items ratings are made for the frequency of behaviour over the past 3 days on a Likert scale of 0 (never) to 3 (more than once every day in past 3 days). Items 18‐21 have descriptions for severity ratings of 0‐3 or yes /no. Scores range from 0‐62. Developed for staff working on psycho‐geriatric wards.

Gormley 2001

Cohen Mansfield Agitation Inventory (CMAI)

Cohen‐Mansfield 1989

Measures reported agitated behaviours in patients with cognitive impairment. A 29‐item scale of verbally/physically aggressive behaviour and verbal/physical non–aggressive behaviour. Each item is rated for frequency ‘since the last visit’ on a 7 point scale (1–7) ranging from ‘‘never’’ to ‘‘several times an hour.’’ A total score is obtained by summing the 29 individual frequency scores, yielding a total score that ranges from

29 to 203. Developed in care home settings.  

Chinese version: assess 43 behavioural problems; each item is scored according to the frequency ranging from 1 (never happened) to 7 (several times an hour). Scores can range from 42‐294.

Huang 2003 (Chinese Version)

Fossey 2006                          Chenoweth 2009

Problem Checklist (PC)

Agar 1997

Assessment of problems experienced by family carers of patients with dementia. The 34‐Item Problem Checklist (Gilleard 1984) was adapted to include a further 5 items. Ratings are made for reported frequency (0‐2) ‐ scores ranging 0 ± 78 and management difficulty/coping (0‐2) ‐ score ranging 0 ± 78. Developed with family caregivers in the UK.

Moniz‐Cook 2008a

Severity of Problem Behaviours

Crichton Royal Behavioural Scale (CRBRS)

Wilkin 1989

Assessment of psycho‐geriatric patients. The 11‐item scale requires ratings for each item on a 1‐5 point scale where each point has a severity description. Items are: mobility, memory, orientation, cooperation, restlessness, dressing, feeding, hearing, continence, sleep and subjective and objective mood. Scores range from 0‐55

Proctor 1999

Neuropsychiatric Inventory (NPI)

Cummings 1994

Assessment of Behavioural and Psychological Symptoms of Dementia (BPSD) using a caregiver interview, with ratings of the frequency and severity of 10 or 12 neuropsychiatric domains (according to the version). Available versions include for Family / community settings and Nursing homes. Both the frequency (F) and severity (S) of each symptom are rated on a four ‐ (1–4) and three‐point (1–3) Likert scale, respectively. A separate score can be calculated for each symptom by multiplying the frequency and severity scores, resulting values ranging from 0 to 12 for each symptom. A total score can be obtained by summing the 12 F_S scores, yielding total scores that range from 0 to 144. A separate rating of caregiver distress can be made on a five point scale from 0 ‐ no distress, 1 ‐ minimal, 2 ‐ mild, 3 ‐ moderate, 4 ‐ moderately severe, 5 ‐ very severe or extreme; distress ranges 0‐60. 

Gonyea 2006

Chenoweth 2009                   Teri 2005b

Pittsburgh Agitation Scale (PAS)

Rosen 1994

Measures the severity of disruptive behaviours within four behavioural groups: aberrant vocalisations; motor agitation, aggressiveness & resisting care. Scored from 0‐4 with a maximum score 16. The score reflects the most disruptive of severe behaviour within each group.

Mador 2004

Behavioural Pathology in Alzheimer’s Disease Rating Scale (Behave‐AD)

Rosen 1994

 Assessment of behavioural symptoms in Alzheimer’s disease. A  25‐item scale with Likert scale of 0‐4 covering paranoid and delusional ideation (7 items), hallucination (5 items), activity  disturbances (3 items), aggression (3 items), diurnal variation (1 item), affective disturbance (2 items), and anxieties (4 items). Ratings range (0‐75) and a global rating of the trouble that the various behaviours are to the caregiver is also recorded (0‐3).

Gormley 2001

Patient mood (depression)

Cornell Scale for Depression in Dementia (CSDD)

Alexopoulos 1988

Assessment of depression in patients with a dementia syndrome administered by a clinician. The interview takes 20 minutes with the carer and 10 minutes with the patient. A 19‐item measure covering mood (4 items), behavioural disturbance (4 items), physical signs (3 items), cyclical functions (4 items), ideational disturbance (4 items). Items are rated on a 3 point scale: absent, mild or intermittent, and severe. Ratings are based on the week prior to the interview and range from 0‐38.

Teri 2003

Automatic Geriatric Examination for Computer Assisted Taxonomy (AGECAT)

Copeland 1986

Measures organic and depression symptoms. Ratings are made from 1 & 2 = subclinical to 5 = severe. It provides syndrome diagnoses of: organicity, schizophrenia, mania, depression, anxiety, obsessional disorder, phobia, and hypochondriasis.

Proctor 1999

Revised Memory & Behaviour Problem Checklist (RMBPC)

Teri 1992

Depression Subscale. Measures reported incidence (0‐9), frequency (0‐36) and caregiver reaction depression (0‐36).

Farran 2004

Teri 2005b

Secondary outcomes: Caregiver

Mood (depression)

Centre for Epidemiological Studies — Depression scale (CES‐D)

Radloff 1977

Detects depressive symptoms, particularly for use in research or screening. A 20‐item scale with scores ranging 0‐60.  A score of 16 = mild depression and 23 and above is indicative of significant depression. Items are rated as occurring Rarely (< 1 day), Some (1‐2 days), Occasionally (3‐4 days) and Most (5‐7 days).

Farran 2004                                        

Teri 2005a

Burgio 2003

Losada‐Baltar 2004      

Hospital and Anxiety Depression Scale (HADs)

Zigmond 1983

Assessment of mood.  A 14 item measure with two sub scales: anxiety and depression. Each item is rated on a four‐point Likert scale, giving maximum scores of 21 each for anxiety and depression. Scores of 11 or more on either sub scale are considered to be a significant 'case' of psychological morbidity, while scores of 8–10 represents 'borderline' and 0–7 'normal'

Moniz‐Cook 2008a

Reaction

Revised Memory & Behaviour Problem Checklist (RMBPC)

Teri 1992

Assessment of behavioural problems in people with dementia.  A 24 item checklist which provides one total score and 3 sub‐scores for the following problems: Memory (7 items), Depression (9 items) and Disruption (8 items). Measures caregiver reports of Incidence (0‐24), Frequency and Reaction (0‐96) to each of the 24 problems. Developed to measure reports of behavioural concerns by family caregivers in the US.

Farran 2004                                     

Gitlin 2003                                        

Gitlin 2010                                    

Teri 2003                                            Teri 2005a                                        Zarit 1987                                          

Burgio 2003                

Teri 2005b

Agitated Behaviour in Dementia Scale (ABID)

Logsdon 1999

A measure of agitation in an outpatient sample of patients with mild to moderate Alzheimer’s disease. A 16‐item measure of frequency and caregiver reaction to common agitated behaviours in community residing dementia patients. Scored on a scale of 0‐3, rated in the past 2 weeks where: 0 = did not occur during the week, 1 = occurred once or twice, 2 = occurred 3‐6 times in the week, 3 = daily or more often.

Teri 2000

Neuropsychiatric Inventory (NPI) Distress

Cummings 1994

The NPI distress scale has an additional question on each of the 10 or 12 (depending on version) domains specifically addressing the level of distress caused to carers by each symptom.  Available versions include for Family / community settings and Nursing homes. Ratings are on a five point scale from 0 ‐ no distress, 1‐ minimal, 2 ‐ mild, 3 ‐ moderate, 4 ‐ moderately severe, 5 ‐ very severe or extreme.  Total distress ranges from 0‐60.

Gonyea 2006

Problem Checklist (PC)

Agar 1997

Assessment of problems experienced by family carers of patients with dementia. The 34‐item Problem Checklist (Gilleard 1984) was adapted to include a further 5 items.

Ratings are made for reported frequency (0‐2) ‐ scores ranging 0 ± 78 and management difficulty /coping (0‐2) ‐ score ranging 0 ± 78. Developed for use with family caregivers in the UK.

Moniz‐Cook 2008a

Burden

Zarit Burden Interview (ZBI)

First described  as the Burden Interview

Zarit 1980

Assessment of the feelings of burden of caregivers in caring for an older person with dementia. A 29‐item scale where scores are interpreted as follows: 0‐21 = little or no burden, 21‐20 = mild to moderate, 21‐40 = mild to moderate, 41‐60 = moderate to severe burden and 61‐88 = severe burden.

Gitlin 2010                         

Gormley 2001                     

Zarit 1987                           

The Screen for Caregiver Burden (SCB)

Vitaliano 1991

Assessment of perceived burden of caring for a person with Alzheimer’s disease. A 25‐item scale with scores for objective and subjective burden. Objective = the number of caregiver experiences occurring independently of their distress. Subjective = overall distress.

Teri 2005a                                 

Teri 2000

Table 2. Description of interventions and quality of included studies

Trial setting

Trial

Study duration from baseline

Intervention duration

Follow‐up assessments

Details of intervention sessions & format

Intervention type, aims and components

Delivered by

Intervention dosage¹

Minimal  1‐2 sessions

Moderate 3‐5

Medium High 6‐10

High > 10

Behaviour Management² = BM

Intervention Information to enable replication of trial.

1. Procedural clarity

2. Manual /protocol

3. Treatment fidelity assessments

4. Follow‐up

Family Care

Teri 2003

24 months

3 months

Post intervention = 3 months.

Follow‐up  data for:

Problem Behaviour (PB) Frequency  & Caregiver (CG) Reaction  = 6 months;

Patient Depression = 6, 12, 18 & 24.

12 x 1 hour sessions, 2 per week for 3 weeks, Weekly for 4 weeks and biweekly for 4 weeks, plus 3 follow‐up sessions

CG Skills Training  Intervention

Aims: CGs taught to identify and modify patient behaviours that impaired day‐to‐day function and adversely affected CR/CG interactions.  Taught how to reduce the occurrences of PB, learn skills to identify and modify precipitants of patient distress. Exercise and Education

Health care professionals delivered sessions (doesn't state how many)

Trainers supervised by clinical geropsychologist (received weekly supervision).

High

1. Reported what components were included in the intervention; but detail on which components were addressed in each hour long session is absent.

2. Treatment protocol/manual

3. Treatment adherence was monitored by weekly supervision of each trainer by a clinical geropsychologist. Protocol sessions videotaped and reviewed by independent raters

4. Followed up to 24 months.

Zarit 1987

24 months

2 months

Post‐intervention = 2 months

Follow‐up = 12 months (data not available)

8 sessions, the last used for Post‐intervention assessment

CG Support Intervention

Aims: Stress‐ Coping Model. Training teach CG to modify situations linked to stress, increase understanding of patient disease, improve

management of PBs and identify useful formal and informal supports

2 Therapists for each group.

Medium High

1. The paper reports what usually occurred in the second session of the intervention, but does not state each session’s agenda.

2. Conceived from a stress‐management approach treatment model, but no mention of a manual.

3. Interventions monitored using audiotapes and supervision sessions to ensure therapists implemented treatment approach.

4. 2 Year longitudinal study but only post‐intervention (2 month) data available.

Gitlin 2003

12

months

6 months

Post‐intervention = 6 months

Follow‐up = 12 months (data not extractable)

Active phase: First 6 months, 5 (90 min) home contacts, 1 (30 min) telephone contact. Maintenance Phase: Subsequent 6 months

CG Skills Training Intervention

Problem solving Intervention Includes: modifying home environments and simplifying daily tasks to address CG concerns; Education, Problem solving, Use of  environmental strategies

Occupational therapist (does not state how many)

Moderate

1. The paper reports what happens in each intervention session as run by the OT.

2. Protocol

3. Interventions monitored using case review, feedback, checklist & telephone interviews to evaluate satisfaction

4. The paper reports 6 month post‐intervention assessment, but not the results of the 12 month follow‐up.

Farran 2004

18 months

3 months

Post‐intervention = 3 months

Follow‐up = 6, 9, 12 & 18 months

12 x weekly sessions (5 group, 7 individual) 2 group booster sessions at 6 & 12 months + as needed telephone contacts

CG Skills Training  Intervention

Aims: Improve CG skill in dealing with PB. Content included: Potential causes/contributors to behavioural symptoms, prevention & management of BPSD, building self efficacy.

Trained professionals (nurses, social workers) trained for 40 hours. 4 people functioned as intervention staff at any one time.

High

1. Paper reports contents of intervention but not each session in detail.

2. Detailed manual of prescribed material for each session

3. Project director and principal investigator supervised implementation & provided corrective feedback on a weekly basis. Group sessions were taped and randomly selected for review.

4. All follow‐up data up to 18 months available.

Moniz‐Cook 2008a

18 months

18 months

Post‐intervention = 6

Follow‐up = 12 & 18 months

4 consecutive weekly in home visits + clinical judgement for future contact & attend in‐service clinical supervision for the 18 month duration. (Interventions were taught prior to the study over 5 half days)

CG Support Intervention

Aims: To train community mental health nurses (CMHNs) to help family carers manage behavioural changes. Includes: Problem solving approaches, Stress‐coping interventions and Functional analysis.

9 CMHNs  (usual group 20 CMHNs) ‐ 20 hrs training initially plus supervision 2 hrs per week for 1st 6 months, 1 per fortnight for next 6 months, 1 per month for last 5 months.

High

1.  The total number of sessions or content of the sessions is not reported.

2. Protocol for CMHNs to conduct 4 in‐home visits & attend supervision. No manual.

3.  Only two CMHNs with dementia specific caseloads completed the ongoing supervision and adhered to the four consecutive family treatment sessions.

4. Follow‐up data for 6, 12 & 18 months

Burgio 2003

18 months

12 months

Post‐intervention =  6 months

Follow‐up data not available

16 in‐home treatment sessions (over 12 month period). Skill Training condition vs. Minimal Support Condition.  3 hour workshop, 4 weekly in home visits for 1 month & 2 in the second month. In the following 10 months home visits were alternated.

CG Skills Training

Aims: To establish a knowledge base for CGs in behaviour management, problem solving, & cognitive restructuring.

Basic information in behaviour management techniques (BMT) & support on the application of behavioural and environmental treatments. Individual behaviour prescriptions.

11 REACH interventionists.

High

1. Reports the intervention procedure & components covered.

2. Manual guided intervention based on common needs and cultural preferences of American family caregivers. Manual available from authors.

3.  Research personnel functioned as both interventionists and assessors. Feedback on accuracy was provided in weekly clinical case review meetings. All therapeutic contacts were audio taped to check accuracy of delivery.

4. Only 6 month data reported.

Teri 2000/

Weiner 2002

12 months

4 months

Post‐intervention = 4 months

Follow‐up = 12 months (Weiner 2002)

BMT 8 weekly and 3 biweekly sessions. 16 week parallel design requiring 11 clinical visits.  Randomisation to medication, BMT or placebo.

Behaviour Management

Aims: Compare Behaviour Management Techniques – BMT‐ with pharmacological treatments for agitation. BMT included: information about AD, strategies for decreasing agitated behaviours.

Therapists with a master’s degree and 1 year clinical experience (doesn't state how many therapists)

High

BM

1.  BMT intervention sessions not reported in detail. Paper only reports number and components of sessions.

2. Protocol

3. Raters participated in ongoing training to assure standardisation. All were trained prior to starting the trial.

4. Post‐treatment data only reported;  Weiner 2002 reports 12 month follow‐up. 

Gitlin 2010

6 months

4 months

Post‐intervention  = 4 months

Follow‐up = 6 months

Up to 11 home & telephone contacts over 16 weeks. Up to 9 occupational therapy (OT) sessions, two nursing home (one home and one telephone) and a maintenance phase of 3 brief OT telephone contacts.

CG Support Intervention

Aims: To help eliminate, reduce or prevent problem behaviours within 3 interacting domains: ‐ Patient based (unmet need, discomfort, pain), Caregiver based (stress & communication style) & Environment based (clutter, hazards).

10 OTs &  2 practice nurses received 35 hours training

High

1.  Reports what took place during the intervention but not a specific outline for each session.

2. No mention of a manual.

3. Treatment fidelity maintained through twice monthly meetings & audiotapes of 10% of home sessions. Each home session was documented in terms of time spent & content covered.

4. Four and six month follow‐up.

Teri 2005a

6 months

2 months

Post‐intervention = 2 months

Follow‐up = 6 months

8 weekly sessions followed by 4 monthly phone calls

CG Support Intervention

Aims: To teach family CGs a systematic behavioural approach for reducing mood and behaviour problems in persons with AD. Teaching ABC rationale and use

Improving CG communication

Increasing pleasant events, enhancing CG support.

5 community consultants – trained by clinical gero‐psychologist. ‐ 2 hour orientation, 2nd training session & pilot case.

High

1. Paper reports on the contents of each treatment session

2.Treatment manual

3. Protocol, Audio taped treatment sessions and rated quality

4. Post‐test and 6 month follow‐up.

Huang 2003

12 Weeks

3 Weeks (main phase)

Post‐intervention

= 3 weeks

Follow‐up = 12 weeks

2 in home sessions over 3 weeks, plus telephone calls every 2 weeks.

CG Skills Training Intervention

Aims: Conceptually built around the Progressively Lowered Stress Threshold (PLST) model. Helping CGs identify the timing & frequency of behavioural problems & explore the causative stressors. Plan environmental and daily schedule modifications. Nurse caregiver collaboration with individualised training to develop individual plans of care.

Investigator – Experienced Gerontological nurse

Minimal

1. The paper reports what was conducted by the investigator on each visit.

2. Manual developed by research team as a guide for the training program

3.  It is not reported whether there were any checks to insure adherence to the manual, however the principal investigator wrote the manual and conducted the intervention.

4. Followed 12 weeks from baseline.

Gormley 2001

10 Weeks

8 Weeks

Post‐intervention = 10 weeks

No follow‐up

4 sessions conducted over 8 weeks.

Behaviour Management Training

Aims: To train CGs in: Dementia education & the development of behavioural interventions by behavioural analysis. CGs taught to identify the precipitating & maintaining factors of behaviour.

Conducted by author.

Moderate

BM

1. The paper reports what the 1^st, 2^nd and subsequent sessions focused on.

2. No mention of manual, the program was developed following a review of guidelines and descriptive studies

3. The paper does not report information on treatment fidelity checks.

4.  No follow‐up

Losada‐Baltar 2004

5 months

2months

Post‐intervention = 2 months

Follow‐up = 5 months

8 Sessions, 2 hours per week (16 hour in total)

CG Skills Training Intervention

Aims: To train CGs in modifying behavioural problems of their relative through: Managing challenging behaviours, defining & identifying the problems, possible causes (ABC) and develop strategies and solutions.

Two psychologists

Medium High

1. States the components of the intervention but not which components were implemented in each session.

2. Due to difficulty translating the paper we are unsure if a manual was used.

3. Unsure regarding treatment fidelity checks

4. Followed up 5 months from Baseline.

Gonyea 2006

6 Weeks

5 Weeks

Post‐intervention = 6 weeks

No follow‐up

5 weekly group sessions (90 mins) including 15 minutes of individual time.

CG Support Intervention

Aims: CG multi‐component behavioural intervention to reduce CG distress through: Behavioural management (identifying ABC), Pleasant events & Relaxation.

Therapists (16‐20 hours training).

Moderate

1. Session topics outlined

2. Highly structured groups with 5 main themes documented in the paper.

3. To monitor treatment fidelity the principle investigator consulted with therapists on a regular basis to review the group session experience and assess group progress.

4. No follow‐up

Assisted Living

Teri 2005b

2 months

2 months

Post‐intervention = 2 months

No follow‐up

2 half day group workshops and 4 individualised sessions

CG Skills Training Intervention

Aims:  To reinforce values of dignity and respect for residents, improve staff responsiveness to resident needs, build specific staff skills to enhance resident care, improve job skill and satisfaction.

Clinical psychologist & graduate student in nursing.

Medium High

1. The paper reports all the essential components and features of the intervention.

2. Manual detailing all specific aspects of training.

3.  Three separate meetings were held to discuss site specific issues that might hinder implementation or sustainability.

4. No follow‐up.

Residential Care

Fossey 2006

12 months

10 months

Post‐intervention = 12 months

No follow‐up

Trial clinician worked with homes 2 days a week over 10 months

CG Skills Training Intervention

Aims: Training in the delivery of Person‐centred care and Skills development training. Included: skills training, behavioural management techniques (ABC) and ongoing training and support

Psychologist, occupational therapist or nurse – supervised weekly by authors.

High

1. Reports the components of the intervention but detail of each session.

2. No mention of a manual just reference to a specific ‘package’ of components.

3.  Staff offered supervision but no report assessing treatment fidelity. Reports the intervention took a consultation approach.

4. 10 month intervention with 12 month follow‐up (for the purposes of this review classed as post‐intervention assessment). No other follow‐ups.

Chenoweth 2009

8 months

4 months

Post‐intervention = 4 months

Follow‐up = 8 months

Training was delivered to 2 care staff selected by managers for 6 hours per day over 2 days, trained staff then helped their colleagues to implement care plans over the 4 month intervention period

Dementia Care Mapping  and Caregiver Skills Training

Aims: Person centred care Need‐driven behaviour model. where staff are educated to

Included: Understand behaviour as a form of communication; recognise that feelings persist despite cognitive impairment; behaviour is a way of expressing needs; understand the impact of staff actions  and use of ABC

3 authors trained by Bradford University led training.

High

1. Details of the interventions components are reported, but additional information was required from the author to clarify the intervention content before this trial could be included into the review.

2. Bradford University training manual

3. No detail on checking adherence to the manual or treatment fidelity.

4. Follow‐up at 8 months from baseline.

Proctor 1999

6 months

6 months

Post‐intervention = 6 months

No follow‐up

7 x 1 hour seminars delivered by hospital outreach team. An experienced psychiatric nurse visited every week to give advice and support individual workers in care planning.

Behaviour Management

Aims: Staff training and psychosocial management of residents PB.  Includes: Formulation of detailed and specific care plans & increasing the interval between non‐contingent interactions (not in response to need)

Hospital outreach team & psychiatric nurse

Medium High

BM

1. The paper reports only the components of each of the seminars

2.No report of a manual

3. No reports of checking treatment fidelity or adherence.

4. No follow‐up.

Hospital Care

Mador 2004

9 Days

9 Days

Post‐intervention = 9 days

No follow‐up

Extended Practice Nurse (EPN) saw patients within 24 hours of randomisation and formulation of a non‐pharmacological management plan of strategies to manage challenging behaviour.

Assumption that Control condition Geriatric assessment was also

Behaviour Management

Aims: Specialist support and education to the ward nursing staff to enable them to facilitate behaviour strategies. Included: Understanding patients needs, patient safety, minimising restraint usage, communication, nursing care & targeted behavioural strategies.

? Geriatrician review as in Control Group +

Extended practice nurse and ward staff.

High

BM

1. The paper reports the components of the intervention only.

2. No mention of a manual

3. No reporting of assessments of treatment fidelity and adherence

4. No long‐term follow‐up

¹ = Intervention dosage is based on the number of contact sessions, not the amount of functional analysis

²  = Intervention focused on Behaviour Management with relatively few other components

Table 3. Overview of outcome measures

Trial

Setting

Outcomes

Author’s description of care recipient (CR) & caregiver (CG) outcomes

Assessment Tools

◊ Measure abbreviated after one full description

∞ Outcome measure not a rating scale

 ∆ Inadequate number of equivalent instruments for data aggregation

□ Instrument not relevant or alternative measure used

Burgio 2003

Family

Care Recipient (CR) Behaviour & Caregiver (CG) Reaction

Revised Memory and Behaviour Problem Checklist (RMBPC) (incidence only) & RMBPC ‘bother or upset’

CG Appraisal of benefits from Caregiving

∆ Positive Aspects of Caregiving (PAC) (developed by REACH investigators)

CG Social Support

∆ Lubben Social Network Index (LSNI) 28 item measure (Berkman 1979 adapted scale)

CG Leisure Time satisfaction

∆ 6‐item scale developed by interventionists

CG Mood

∆ State‐trait personality inventory (anxiety sub scale 10 items)

The Centre for Epidemiologic studies –Depression Scale (CES‐D)

CG Desire to institutionalise

□ 7 Item scale by Morycz 1985

Farran 2004

Family

CR Behaviour/CG Depression

◊ RMBPC

CG Mood

◊ CES‐D

CG Skill

∆ Behavioural Management Skill –Revised (BMS‐R)

Time to institutionalisation

∞ Interval from Baseline to initial entry into long‐term care Facility

Gitlin 2003

Family

CR Behaviour

◊ RMBPC (incidence only)

CR Level of ADL assistance required

□ Functional Independence Measure (FIM)

CG Objective & Subjective Burden

∞ Vigilance, Total hours of ADL help & Help received for ADLs.

◊ RMBPC (upset sub scale)

CG Perceived Mastery

∆ Care‐giving Mastery Index (CMI)

CG Skill Enhancement

∆ Task Management Strategy Index (TMSI)

CG Wellbeing

∆ Perceived Change Index (PCI)

CR Cognitive Ability

□ Mini Mental State Exam (MMSE)

Gitlin 2010

Family

CR Behaviour & CG Reaction (upset)

16‐item Agitated Behaviors in Dementia Scale and 2 items (repetitive questioning, hiding/hoarding) from RMBPC, plus 3 other items (wandering, incontinence, shadowing).

CG Mood

◊ CES‐D

CG Burden

Zarit Burden Interview (ZBI)

CG Skill enhancement

∆ ◊ TMSI

CG Perceived Benefits

∆ 11 item survey developed by investigators.

CG change

∆ ◊ PCI

Gonyea 2006

Family

CR behaviour (Severity & Frequency) & CG Distress

Neuropsychiatric Inventory (NPI)

CG Burden

◊ ZBI

CR Functional Impairment

□ Activities of Daily Living (ADL)

Gormley 2001

Family

CR Behaviour (Severity & Frequency)

Behavioural Pathology in Alzheimer’s disease scale (BEHAVE‐AD)

Rating Scale for Aggressive Behaviour in the Elderly (RAGE)

CG Burden

◊ ZBI

CR Cognitive Ability

□ ◊ MMSE

CR Functional Ability

□ Blessed Dementia Rating Scale

Huang 2003

Family

CR Behaviour

Cohen Mansfield Agitation Inventory (CMAI)

CG self efficacy for managing agitation

∆ Agitation Management Self Efficacy Scale (AMSS)

CR Cognitive Ability

□ ◊ MMSE

CR Dementia Severity

□ Clinical Dementia Rating (CDR)

CR Activities of Daily Living

□ Barthel Index

Losada‐Baltar 2004

Family

CR Behaviour & CG reaction (upset)

Memory & Behaviour Checklist (MBCL‐A & MBCL‐B)

CG Dysfunctional thoughts about care

∆ Beliefs about Care‐giving Questionnaire (BACS)

CG Mood

◊ CES‐D

CG Perceived Support

∆ Perceived Support Questionnaire (PSQ)

CG Perceived Stress

∆ Perceived Stress Scale (PSS)

Moniz‐Cook 2008a

Family

CR Behaviour & CG Management/difficulty coping

Problem Checklist (PC)

CR Global Dependency

□ Global Deterioration Scale (GDS)

CG psychiatric morbidity

∆ General Health Questionnaire (GHQ)

CG Mood

Hospital Anxiety and Depression Scale (HADS)

Teri 2000

Family

Clinically meaningful change in CR

□ ADCS Clinical Global Impression of Change scale (ADCS‐CGIC)

CR function (physical and cognitive)

□ Physical Self maintenance (PSM)

□ Instrumental activities of daily living (IADL)

□ MMSE

CG Burden & Reactivity to specific disruptive behaviours

Screen for Caregiver Burden (SCB)

◊ RMBPC reaction (not reported)

CR behaviour

□ Consortium to establish a registry for Alzheimer’s disease (CERAD)

□ Behavioural Rating scale for Dementia (BRSD)

◊ RMBPC (Frequency)

□ ◊ CMAI (Frequency)

Agitated behaviour in dementia scale (ABID) (Frequency & Reaction)

Teri 2003

Family

CR Behaviour & CG distress

◊ RMBPC

CR Physical Health and Function

□ Short Form Health Survey (SF‐36)

□ Sickness Impact Profile Mobility (SIP)

CR Mood

Cornell Depression in Dementia Scale (CDDS)

□ Hamilton Depression Scale (HDRS)

CR Cognitive Ability

◊ MMSE

Other outcomes:

∞ CR walking speed, functional reach and standing balance.

Teri 2005a

Family

CR Behaviour

◊ RMBPC

◊ NPI

CR Quality of life

□ Quality of Life in Alzheimer’s disease scale (QOL‐AD)

CG Mood

◊ CES‐D

CG Mood

□ ◊ HDRS

CG Perceived Stress

∆ ◊ PSS

CG Burden

◊ SCB

CG Sleep Problems

∆ Caregiver Sleep questionnaire

CG Feelings of Competence

∆ Short sense of Competence Questionnaire (SSCQ)

CR Cognitive status

□ ◊ MMSE

Adverse reactions

∞

Zarit 1987

Family

CR Behaviour & CG distress

Memory and Behaviour Problem Checklist (MBPC)

CG Stress associated with care giving

Burden Interview (BI)

 CR Frequency of psychiatric symptoms

□ Brief Symptom Inventory (BSI)

Social Support

∞ Amount of interaction with informal support network, amount of assistance by others & caregiver rating of adequacy of social support.

Therapeutic dimensions of Intervention

∆ Caregiver Change Interview (CCI)

CG Perception of intervention

∆ Global rating of situation improvement

CR Cognitive Ability

□ ◊ MMSE

Chenoweth 2009

Residential

CR Behaviour

◊ CMAI

◊ NPI

CR Quality of life in later stage dementia

□ Quality of Life Index (QUALID)

Amount of physical restraint

□ Quality of Interaction Schedule (QUIS) observations

CR Global Dependency

□ ◊ GDS

Other outcomes:

∞ Antipsychotics & benzodiazepine doses, incidents and admissions to hospital. Also conducted an economic analysis.

Fossey 2006

Residential

CR Behaviour

◊ CMAI

CR Dementia Severity

□ ◊ CDR

Neuroleptic use

∞ Daily chlorpromazine amounts to national formulary

CR Falls

∞ Observations

CR Quality of life and well‐being

Measurement scale not reported.

Proctor 1999

Residential

CR Behaviour

Crichton Royal Behavioural Rating Scale

CR Organic and Depressive symptoms

Automatic Geriatric Examination for Computer assisted taxonomy (AGECAT)

CR Activities of daily living

□ Barthel Index

Teri 2005b

Assisted Living

CR Behaviour & CG Reaction

◊ RMBPC

□ ◊ ABID

◊ NPI

CR Mood

RMBPC sub scale

□ Geriatric Depression Scale

□ Clinical Anxiety Scale (CAS)

Staff feelings on capability to provide care for a person with dementia

∆ ◊ SSCQ

CR Cognitive ability

□ ◊ MMSE

Mador 2004

Hospital

CR Behaviour (severity)

Pittsburgh Agitation Scale (PAS)

Appropriateness of psychotropic medication

□ Medication Appropriateness Index (MAI)

Other outcomes

∞ Total daily doses of benzodiazepines and antipsychotics administered, length of stay, discharge destination, number of falls, nursing satisfaction, next of kin (NOK) satisfaction with care.