1. Table 1. Description of primary and secondary outcome measures.
| 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 |
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| 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 |
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| 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 |
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