Carers and families of people with mental health problems PSYC 377

 Between 40 – 90 percent of people with mental illnesses remain in close contact or live with relatives who provide them with long-term physical and emotional support  The family members might undertake additional responsibilities and tasks  These additional responsibilities and tasks provided ‘unpaid’ and ‘informally’ are referred to as ‘carer burden’ Carer Burden

 Objective Impact: Practical problems experienced by the individual’s family related to the close contact between families and people with mental health problems:  disruption of family relationships,  constraints on social, leisure and work activities  Financial difficulties  Negative impact on physical health Objective and Subjective Impact of Care

 Subjective impact: Psychological reactions that family members experience which is determined by resilience, coping mechanisms, strength of the relationship before the onset of disease, level of support from social networks, access to formal services:  Feeling of loss  Depression  Anxiety  Embarrassment in social situations  Stress of coping with disturbing behaviors  Frustration of caused by changing relationship Objective and Subjective Impact of Care

 Phychoses: Following first admission most return to live with their relatives  Out of 179 persons with schizophrenia, more than half continue to live with families after 15 years  Risk of suicide and depressive mood of patients increase the burden of carers  Lack of independence and social skills, low levels of interest in leisure activities and a poor state of self-care makes coping difficult for families Impact of Caring

 Affective disorders:  Persistent depression leads to decrease in social activities and loss of income  Families of people with bi-polar disorder experience distress, more distress is experienced as the patient is thought to have more control of his/her behavior and cyclical nature of the disease requires attention Impact of Caring

 Cognitive disorders:  Looking after someone with dementia or Alzheimer’s disease can be a 24-hour activity  As disease of the patient progresses, caregiving becomes full-time occupation  Social isolation from family and friends  Depression and distress is experienced by the carers Impact of Caring

 Other disorders:  Obsessive-compulsive disorder: reduction in social activities leading to isolation over time  Eating disorders: Impact might be higher than families of people with psychoses Impact of Caring

 Negative Impact of Caring:  Depression  Insomnia  Headaches  Irritability  Fatigue  Neck and shoulder pains Impact of Caring

 Positive Impact of Caring:  Feelings of gratification, love and pride Impact of Caring

 Treated as a ‘ free resource’ by policy makers and other stakeholders  Methodological issues with estimating informal costs of care  Loss of employment, loss of employment opportunities and cost of leisure time should be included (Cost of 2379 carers of schizophrenia patients lost 51.5 million AUS dolars because they gave up employment opportunity) Economic Impact of Caring

 Expressed emotion: High-expressed emotion carers (HEE) experience twice the level of burden than low- expressed emotion carers (LEE)  Coping styles: Coercion and negative criticism increase burden  Carer’s social network: Cope with stress better Risk factors associated with carer burden

 Older children find themselves caring for an older parent  Experience quilt and embarrassment  High-long term costs Child caregivers

 Access to advice and information  Psychoeducational interventions  Legislation  Empowerment of families Activity 1: Activity 2: For an illness search the internet for support groups What could be done?