Family Work in a Portuguese Setting: a Major Problem Concerning Older Adults

1. Family Work in a Portuguese Setting: a Major Problem Concerning Older Adults Manuel Gonçalves Pereira, Miguel Xavier Dept. Mental Health, Faculty of Medical Sciences, Universidade Nova de Lisboa (Portugal)

2. Family Work in a Portuguese Setting: a Major Problem Concerning Older Adults • Background • Questions • Cases • Conclusions

3. 1. Background (I) • High quality research on caregiving experiences (severe mental illness, dementia). BUT • How to target specific burden determinants by feasible psychosocial interventions, with favourable cost-benefit profiles ? • How to implement risk assessment routines ?

4. PORTUGUESE RESEARCH HAS ALSO ADRESSED CAREGIVING ISSUES Burden Coping Disability Positive aspects of caregiving Gonçalves Pereira, M; Caldas de Almeida, JM (1999): Caregiver burden in families of the severely mentally ill.Acta Médica Portuguesa, 12: 161-168. Gonçalves Pereira, M; Caldas de Almeida, JM; van Wijngaarden, B. (1999): Assessment of caregiving: the IEQ Portuguese version. in Abstracts of the XIth World Congress of Psychiatry. Magliano L, Fadden G, Economou M, Xavier M, Maj M (2000): Family burden and coping strategies in schizophrenia: 1-year follow up data from the BIOMED I study.Soc Psychiatry Psychiatr Epidemiol, 35: 109-115. 1. Background (II)

5. Positive aspects Burden Psychological distress G.Pereira & Mateos (2006)

6. Magliano L, Fiorillo A, Fadden G, Gair F, Economou M, Kallert T, Schellong J, Xavier M, Gonçalves Pereira M, Torres Gonzalez F, Palma-Crespo A & Maj M (2005). Effectiveness of a psychoeducational intervention for families of patients with schizophrenia: preliminary results of a study funded by the European Comission. World Psychiatry, 4:1, 45-49. Gonçalves Pereira, M; Xavier, M; Fadden, G (2006): Family interventions in schizophrenia: from theory to the real world in Portugal today.Acta Médica Portuguesa, 19: 1-8. 1. Background (III) FAMILY INTERVENTIONS ARE NOT ROUTINELY IMPLEMENTED IN PORTUGAL Some REASONS have been explored in the ‘Psychoedutraining’ study and seem related to: • organizational issues, • less openness to family approaches • staff burnout.

7. 2. Questions • Adherence to family interventions (eg relatives’ groups, BFT) may be difficult in families with older adults. What about effectiveness ? • Two separate contexts: • Families in which caregivers are older parents, often living alone with a young person with psychosis. • Families of elderly demented or psychotic patients. • Lack of old age mental health teams in Portugal...

8. 3. Cases (I) • The “Ajuda” study (1996) • Patients with: schizophrenia or affective disorders presenting psychotic features (N = 80) • Primary caregivers (N = 80): • 22,5 % > 65 yrs • mothers of young male patients: 26,3 % • IEQ worrying subscale: 8,25 (± 3,35)

9. 3. Cases (II) • The “Psychoedutraining” Study (2002-2004) Impact of two alternative training programmes on the implementation and effectiveness of a psychoeducational intervention for families of patients with schizophrenia

10. Major targets were attained Home visits were an exception Pace of intervention was not entirely satisfactory Heavy caseloads Non clinical duties Professional burnout Personal obligations Lack of basic therapeutic skills in a minority of trainees Family Intervention Mental Health Policy and MHS organization

11. The “Psychoedutraining” Study (2002-2004) Regarding families with elderly people: • treatment integrity is difficult to maintain • flexible approaches are warranted 13 families

12. Cognitive performance and aging ? • Intelligence • Fluid ≠ crystallized intelligence • Intelligence does not decline with age ! • Memory • It takes longer to search for memory stores to retrieve information • What about short-term memory ? • Attention, concentration • ‘cocktail party’ effects and ability to filter out irrelevant information Simplify Allow more time !

13. 3. Cases (III) • The “Families and Psychosis” Study(2006 - ) • n = 57 (ongoing study) • 24 (42.1 %) > 64 yrs (among primary caregivers) • Involvement Evaluation Questionnaire(Wijngaarden & Schene, 1997): high scores in specific domains • Tension: 16.33 ± 5.07 • Supervision: 8.07 ± 2.74 • Worrying: 19.39 ± 5.28 • Urging: 15.09 ± 5.53 • Total score: 54.60 ± 13.11 • GHQ-12 positive (Likert): 36 (63,2 %) GHQ-12 positive (conventional scoring): 30 (52,6 %)

14. 3. Cases (IV) • The “Families and Dementia” Study (2006 - ) • n = 46 (ongoing study) • 16 (34,8 %) > 64 yrs (mostly primary caregivers) • Zarit Burden Interview(Zarit, Orr & Zarit, 1985): high scores • GHQ positive (Likert): 15 (32.6 %)

15. Example of a recent relatives’ group • Clínica Psiquiátrica de S. José (Lisboa) • n = 8 • mean age 60,5 yrs (SD 8.5; range 34-79) • gender: 3 male, 5 female • different levels of literacy • three spouses, three daughters, a brother, a son-in-law

16. Family Work in a Portuguese Setting: a Major Problem Concerning Older Adults • Background • Questions • Cases • Conclusions

17. Families in which caregivers are older relatives General health issues Difficulties in attending outpatient sessions  worrying about future Risk of  EE (eg if living alone with a younger person with psychosis) Lack of specific family intervention policies. Families of elderly patients with dementia Often somatic health issues (most primary caregivers are elderly care providers) Less worries about long term future ? Less EE ? Less stigma ? Lack of specific mental health services, but more informal support (relatives’ self help organizations) Two contexts:

18. Similarities • Differences • Burden and psychological distress • Strenghts and positive experiences

19. Families and dementia • Effectiveness of psychoeducational interventions in families of demented patients has been documented (Sorensen et al., 2002; Mittelman, 2005). • Psychoeducation provides knowledge, but supportive interventions may have a greater impact in emotional and psychological well-being of patients and caregivers (Mittelman, 2005).

20. Why do family interventions fail to be implemented (or demanded) ? • Problems related to services and staff ? • mental health teams face organizational difficulties and staff burnout • home-based interventions are not routinely available • Problems related to families and users ? • families’ adhesion may be poor • poverty, lack of “empowerment” culture • A question of mental health literacy ? • Badly targetted interventions ? • ...

21. Psychoeducational programs must target families and their living situation, as benefits vary accordingly(Coon et al., 2003). • Flexible interventions (and those including the whole family) provide more enduring and valuable support(Brodaty et al., 2003). NEEDS ASSESSMENT

22. New medical school curriculum includes family and caregiving issues. Postgraduate training in old age psychiatry now includes specific training in family and caregiving issues. Caregiver assessments must be implemented (research, services’ evaluation, clinical settings). Routinely evaluating carers might be a first step towards more systematic and need-targetted interventions. Against nihilism in Portugal...

23. From: Preset schemas Weaknesses Unbelief To: Therapeutic flexibility Strenghts and opportunities HOPE Family Work in a Portuguese Setting: a Major Problem Concerning Older Adults