and NPI-Q were employed as measures of cognitive, functional and ... and how to cope with it; males were more worried about financial issues (figure 2).
CARING FOR CAREGIVERS Centro per il Trattamento e lo Studio dei Disturbi Cognitivi
Nicole TRAVI, Ilaria COVA, Laura MAGGIORE, Valentina CUCUMO, Giulia GRANDE, Claudio MARIANI, Simone POMATI
BACKGROUND BACKGROUND AND ANDAIMS AIMS Dementia is one of the major challenges of this century. Although dementia prevalence appears steady over time (Cova, 2016), the number of people affected by dementia worldwide is growing due to an increase in aging population. Interventions in support of frail elderly (and particularly patients with dementia) aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. In order to ensure adequate services it is necessary to identify the patients' needs and the needs perceived by caregivers. Several researches throughout the world have been carried out with the aim to detect the needs perceived by caregivers of patients affected by dementia; however results are scant and at times inconsistent. The main causes of variability lie on definition of caregiver, patient / caregiver relationship, setting, type and duration of disease. To date, the few studies conducted in Italy (Dello Buono, 1999; Rosa, 2009; Rossi Ferrario, 2003), whilst employing assorted caregiver definitions and different questionnaires, underline how the psychological and social support and information on the disease represent the main requests.
Andersen and Newman Framework of Health Services Utilization * The aim of our study was to assess caregivers’ perceived needs and to correlate them to their socio-cultural features and to patients’ clinical characteristics, in order to provide tailored interventions.
Age Gender Education Occupation Ethnicity Culture Social network Attitudes, values, knowledge Health and functional state Symptoms of the disease Worries Importance and magnitude of the problem professional judgment about people's health status and their need for medical care. Means / know-how to access health services income (health insurance) Extent and quality of social relationships Travel Available health personnel and facilities Waiting time Genetic factors Psychological characteristics
Demographic
Predisposing factors
Social Structure Health beliefs
SUBJECTS SUBJECTS AND ANDMETHODS METHODS
Perceived
Needs
Definition of caregiver: caregiver
Evaluated
A person who takes care of the patient in the activities of daily living, no matter if a relative, a friend or a paid assistant
Personal / Family
Recruitment: •Caregivers of outpatients with (ascertained) dementia consecutively visited at the memory clinic of the Luigi Sacco Hospital – Milano
Possible additions
•The caregiver had to be present at the time of the visit •Time frame: from June to September 2016
Community
Enabling factors
11
Caregiver need assessment questionnaire
Measures: 0
1
2
B Information on the disease
4
8
•Caregivers needs were assessed by means of the CAREGIVER NEED ASSESSMENT (CNA) questionnaire (Moroni, 2008)
B How to deal with caretaking tasks
4
B Problematic behaviors
•Two open-ended questions were presented before and after the CNA, in order to collect needs possibly not included in the questionnaire.
Personal, social and clinical variables were collected taking into account the Andersen and Newman Framework of Health Services Utilization (figure 1). 1
– Which are your needs as a caregiver? – Are there any other needs beyond those expressed in the questionnaire? •Caregivers burden and distress were measured with the Zarit Burden Inventory (ZBI) – short form (Chattat, 2011) and the Neuropsychiatric inventory / short form (NPI-Q) – distress score (Kaufer, 2000) respectively. •Mini-Mental State Examination (MMSE) (Folstein, 1975), Clinical Dementia Rating Scale (CDR) (Hughes, 1982) and NPI-Q were employed as measures of cognitive, functional and psycho-behavioral impairment. Comorbidities were assessed by means of Cumulative illness rating scale (CIRS) (Salvi, 2008), with CIRS-2 describing the number of active diseases.
RESULTS RESULTS Between June and September 2016, 50 caregivers were recruited. Females were 62% of the sample. Mean age was 58 (± 14.9) years, 56% had high school or university education. More than half (58%) were married, 62% were children of the patients. About one third had retired from work, while 46% had still a full time occupation. Length of assistance ranged from 1 to 120 months (median 24). About one quarter of the respondents assisted the patient for less than 3 hours a day while for 46% the assistance lasted all day long. A minimal share (14%) had previous experiences as caregivers, only 6% were paid caregivers. Females were one third (64%) of the 45 patients recruited (for some patients more than one caregiver was interviewed). Mean age was 79.7 (± 9.9) years, 50% had primary school education. One third (34%) was married while 38% was widower. Twenty percent of the patients lived with a paid caregiver. More than half had a moderate to severe dementia (CDR = 2 in 35.6%, CDR = 3 in 20%); mini-mental test mean score was 16.2 (± 7.0). Comorbidities were few (CIRS-2 = 4 ± 1.8). CNA total score (figure 2) 2 had a mean of 35.2 (± 10.9), with a Cronbach alpha of 0.91. CNA-A (items related to emotional and social support needs) and CNA-B (items related to needs of information and communication) scores were respectively 16.5 (± 5.4) and 17.8 (± 5.1) and were highly correlated (figure 3). 3 Higher scores of CNA (suggestive of more needs) were associated to a major burden in caregiving (figure 4) 4 and were related to a more severe behavioral and psychological symptom profile of patients with dementia (figure 5). 5 ZBI was highly correlated with NPI-Q distress score (figure 6). 6 Caregivers of patients with more severe functional impairment exhibited more needs in information about caregiving tasks and how to cope with behavioral disturbances (figure 2). No association emerged between severity of dementia and CNA score. Among caregivers, the children of patients were those who reported more needs, particularly about information on disease and how to cope with it; males were more worried about financial issues (figure 2). 2 Thirty-four caregivers (68%) responded to the first open-ended question (for a tag cloud see figure 7), 7 while it was negligible the share of responders to the second open-ended question. The only item missing from the questionnaire and identified by means of the open-ended question was concern about safety.
ITEM
Q
C
36 52
10
14
30 52
38
8
12
32 48
8
A Help in caregiving (sharing)
22
18
30 30
8
B Knowledge of future problems
6
6
24 64
10
A Financial support
8
20
24 48
2
B Ease of contact with health staff
6
14
36 44
4
A Manage change in relations
4
18
24 44
0
A Support from relatives
6
16
24 54
0
B Involvement in decisions
4
24
30 42
0
A Reassurances
10
22
32 36
2
B Communication with health staff
4
12
42 42
0
A Sharing the experience of others
22
26
30 22
2
B Privacy
22
26
30 22
2
A Community services
8
10
20 62
2
A Psychological support
10
30
30 30
10
A Spiritual support
64
18
10
8
0
34
14
18 28
6
Help in homework
3
M
E
S
22
10
Other
0 – 3 importance of the item (not at all – very important, as %) Q: (first) open-ended question (%) Factors related to caregivers: caregivers C: children; M: males; E: education; Factors related to patients: patients S: severity of the disease
33
44
55
66
DISCUSSION DISCUSSION AND ANDPERSPECTIVES PERSPECTIVES CNA emerged as a complete and reliable instrument, suitable for use in clinical practice. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers, help to improve the quality of formal and informal assistance and to tailor the offer to the specific situation. Similar to the results of previous work in this field, the need for information emerged as the main necessity. Further research should compare the perspectives of different caregivers for the same patient (in our sample such information was available only for a negligible share and did not allow further analyses) and should explore the point of view of people with different cultures (at urban, national and international levels). In addition, once the needs have been revealed and the appropriate measures have been undertaken, a similar research should be carried on to evaluate the outcomes.
REFERENCES • R Chattat, V Cortesi, F Izzicupo, ML Del Re, C Sgarbi, A Fabbo, E Bergonzini. The Italian Version of the Zarit Burden Interview: A Validation Study. International Psychogeriatrics 2011; 23 (5): 797–805. • I Cova, A Markova, I Campini, G Grande, C Mariani, S Pomati. Not just one moment in time: worldwide trends in dementia prevalence. Neurological Sciences, 2016; S445 • M Dello Buono, R Busato, M Mazzetto, B Paccagnella, F Aleotti, O Zanetti, A Bianchetti, M. Trabucchi, D DeLeo. Community Care for Patients with Alzheimer’s Disease and Non-Demented Elderly People: Use and Satisfaction with Services and Unmet Needs in Family Caregivers. International Journal of Geriatric Psychiatry 1999; 14 (11): 915–24. • MF Folstein, SE Folstein, PR McHugh. Mini-Mental State. A Practical Method for Grading the Cognitive State of Patients for the Clinician. Journal of Psychiatric Research 1975; 12 (3): 189–198 • CP Hughes, L Berg, WL Danziger. A New Clinical Scale for the Staging of Dementia. British Journal of Psychiatry 1982; 140 (6) • DI Kaufer, JL Cummings, P Ketchel, V Smith, A MacMillan, T Shelley, OL Lopez, ST DeKosky. Validation of the NPI-Q, a Brief Clinical Form of the Neuropsychiatric Inventory. The Journal of Neuropsychiatry and Clinical Neurosciences 2000; 12 (2): 233– 239. • L Moroni, C Sguazzin, L Filipponi, G Bruletti, S Callegari, E Galante, I Giorgi, G Majani, G Bertolotti. [Caregiver Need Assessment: a questionnaire for caregiver demand]. Giornale Italiano Di Medicina Del Lavoro Ed Ergonomia 2008; 30 (3 Suppl B): B84-90. • E Rosa, G Lussignoli, F Sabbatini, A Chiappa, S Di Cesare, L Lamanna, O Zanetti. Needs of Caregivers of the Patients with Dementia. Archives of Gerontology and Geriatrics 2010; 51 (1): 54–58 • S Rossi Ferrario, P Vitaliano, AM Zotti, E Galante, R Fornara. Alzheimer?s Disease: Usefulness of the Family Strain Questionnaire and the Screen for Caregiver Burden in the Study of Caregiving-Related Problems. International Journal of Geriatric Psychiatry 2003; 18 (12): 1110–14. • F Salvi, MD Miller, A Grilli, R Giorgi, AL Towers, V Morichi, L Spazzafumo, et al. A Manual of Guidelines to Score the Modified Cumulative Illness Rating Scale and Its Validation in Acute Hospitalized Elderly Patients. Journal of the American Geriatrics Society 2008; 56 (10): 1926–1931 • * http://umanitoba.ca/faculties/health_sciences/medicine/units/community_health_sciences/departmental_units/mchp/protocol/media/Andersen_and_Newman_Framework.pdf
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