Caregivers of mentally ill persons - Do's and Don'ts

Caregivers of persons with chronic mental illness are usually family members, 'individuals whose own happiness is entwined with the well-being of people who are dear to them'. The burden of care is associated with significant stress. For one family the stress was unbearable. They abandoned their mentally ill daughter in a hospital. This story is repeated often enough in urban areas like Pune.

How can a caregiver help a relative with mental illness?

DOs

Follow the treatment

See to it that the person takes the prescribed dosage of medication regularly. Failure to keep to the dosage may lead to a relapse of the illness.

Watch for a relapse

A person in your care may suffer a relapse for no obvious reason. Watch out for early signs such as sleeplessness, restlessness, and irritability. Take the person immediately to a psychiatrist, so that medication may be adjusted.

Take interest and appreciate

Talk to the person. Show an interest in what he or she is doing. Appreciation of the smallest task is important. Try to prolong normal talk and conversation.

Assign small responsibilities

Get the person to perform simple tasks around the house. Keep these tasks small and uncomplicated.

Supervise
The need for supervision varies.

• Constant supervision: Persons who are chronically ill or who express suicidal thoughts and seem very depressed.
• Periodical supervision: To ensure that drugs are taken, personal hygiene is maintained and that there are no signs of depression.
• Minimal supervision: As patients become self-sufficient they can be trusted to function alone safely.

Acceptance

The family must realise limitations and weaknesses of the person being cared for. Caregivers can minimize frustration by learning not to expect the impossible the ill relative. The patients condition will improve – but slowly.

Support services

Do utilise support services available in the community. Mental illness is included in the Persons with Disabilities Act (1995). This act has sections related to education and employment of individuals with mental illness.

Ensure some ‘ME’ Time

While caring for a loved one it is easy to neglect oneself. Stick to a routine for meals and sleep. Arrange for someone to care for the relative at least once or twice a week. Preserved health will ensure continued care for the dependent relative. Caregivers who spend some time away from their ill relatives express more satisfaction in caring for them.

DONTs

Don’t criticise
Derogatory criticism, taunting or disbelieving can have a traumatic effect on the mentally ill person who is in a very sensitive state. Arguing and harassing only adds to the stress and may lead to a return of acute symptoms.
Refrain from over-involvement
Sometimes the person being cared for may interpret interest and support as interference and meddling. In that case it is better to back off. Stand by in case of need, rather than getting involved actively.
Don’t exert social pressure
Do not try to make the person aware of social and financial responsibilities while undergoing treatment. Show that you believe in and value their efforts. As the person improves, he or she should be allowed to grow slowly into a realisation of abilities and responsibilities.

What are the factors related to caregiver satisfaction?

(Kartalova-O’Doherty and Doherty, 2010)
Finding caring services. A caring psychiatrist plays a crucial role in caregiver satisfaction.
Being accepted as a partner in caring for the ill person. Satisfied caregivers see their role as an additional source of social support for rehabilitation or recovery for their relative. They feel this role is accepted by the mental health services.
Interrelated factors

• Supportive and non-intrusive relationships between carers and their ill relatives
• Supportive community. A supportive community is essential to reduce stigma associated with chronic mental illness.
• Suitable family support programmes. Caregivers are left to fend for themselves or when they give up, to leave their relatives at some soul-less 'home'.

Caregivers have a major role to play in re-socialization, vocational and social skills training of a relative with mental illness. There is a shortage of rehabilitation professionals to deliver these services in Pune. The lack of infrastructure, funds and political support for mental heath care places almost the entire burden of caring for persons with mental illness on their families (Avasthi, 2010).

1. Avasthi A. Preserve and strengthen family to promote mental health. Indian J Psychiatry 2010;52:113-26
2. Yulia Kartalova-O’Doherty and Donna Tedstone Doherty. Satisfied Carers of Persons With Enduring Mental Illness: Who and Why? Int J Soc Psychiatry. 2009 May; 55(3): 257–271. doi: 10.1177/0020764008093687.

Schools, punishment and suicide - teenagers dying of shame

A Pune school joined the ranks of those in which a punished and humiliated teenager committed suicide. A teenage life snuffed out by the psychological pain of humiliation. It was apparently over his talking with a girl student. He was thrashed by the school principal, two teachers and the girl's uncle. This was not punishment - it was physical abuse. The boy did not return home after school. His father, a labourer, went to the school to look for him. The next morning the teenager’s body was found on the railway tracks.

Labourers moving to their work-site

Behaviours perceived as undesirable by teachers

The chain of events in this suicide apparently begins with the teenager talking to a girl student - normal adolescent behaviour. It is in the stage of adolescence that opposite-sex social interaction begins. A co-ed school would be the ideal place for this adolescent interaction. Yet this behaviour was perceived as seriously undesirable by the school authorities. Let’s look at other behaviours perceived as undesirable by teachers (Borg MG, 1998).

• Teachers perceive drug abuse, bullying and destruction of property as the most serious problem behaviours. Inquisitiveness and whispering are rated as the least serious
• Cheating, lying, masturbation and heterosexual activity are considered as more serious in girls. In boys, dreaminess, disorderliness, silliness, quarrelsomeness, and restlessness are considered to be more problematic.
• Female teachers perceive masturbation and obscene notes as more serious than male teachers. Male teachers perceive disorderliness to be more serious.

Punishment in schools

In the next step of the chain of events the teenager was punished for his normal adolescent behaviour.

Punishment is the application of an adverse stimulus after an unacceptable behaviour has occurred. The goal is to reduce the probability that the behaviour will recur. However, punishment, especially in public will also result in loss of self-esteem and humiliation. Public humiliation is known to promote further aggression - not reduce it.

In a school system there are better ways to induce behavioural change while preserving the child’s dignity. All behavioural measures start with defining the problem behaviour. Talking to a girl-student in a co-ed school is only problem behaviour when it is viewed on social class lines. School authorities and teachers need to realise their role as promoters and nurturers of responsible freedom and equality. As educators they need to go beyond their own personal biases.

Humiliation

A major interpersonal risk factor for suicide in India is humiliation (Bhatia et al, 1987). Humiliation is strongly related to aggressive behaviour. Suicide is nothing other than aggression turned inward (Freud. 1919). Middle class status protects the individual against aggression when humiliated (Aslund et al, 2009). That protection was not available for this lower socio-economic status labourer's son.

The outskirts of Pune are a churn of economic activity sucking in people with the promise of opportunity for work. In the mornings the roads from surrounding villages are lined by labourers walking with tiffin in hand to the nearest transport hub. Many among these house their families in one room shacks. It is a tribute to our system that at least for some among them the education of their children in a proper school is not just a dream. It is a shame on us that ten years of education and commitment of parents and the state can be cut short by insensitive punishment and humiliation by parents and educators. One labourer’s child died of that shame.

Top

1. Aslund C, Starrin B, Leppert J, Nilsson KW. Social status and shaming experiences related to adolescent overt aggression at school. Aggress Behav. 2009 Jan-Feb; 35(1):1-13.
2. Bhatia SC, Khan MH, Mediratta RP, Sharma A. High risk suicide factors across cultures. Int J Soc Psychiatry. 1987 Autumn; 33(3):226-36.
3. Borg MG. Secondary school teachers' perception of pupils' undesirable behaviours. Br J Educ Psychol. 1998 Mar; 68 (Pt 1):67-79.
4. Freud S. Mourning and Melancholia. 1919

How do I know if my partner is cheating on me - evolution, sexuality and relationships

Last week I gave a talk on Personality and Sexuality. One question that cropped up was - "How do I know if my partner is cheating on me?" By chance the next morning there was a newspaper article attributing uncommitted sex, one-night stands, and acts of infidelity to genetics.

Individuals who have frequent sex with multiple partners are psychologically different from those who have frequent sex with single partner (Simpson & Gangestad, 1991). This sociosexual difference places individuals in two groups

1. Unrestricted sociosexual types, have a higher number of sexual partners, and one night stands. They have a permissive attitude to casual and uncommitted sex.
2. Restricted sociosexual types, require greater closeness and commitment before sex with their romantic partner.

 Genetics plays an important role in sociosexuality

Genes evolve to enhance survival of the species. From an evolutionary viewpoint females reproduce with a mate who will invest in their offspring and produce offspring with an advantaged genetic makeup. Female socio-sexual orientation exists because males vary in the quality of their genes.

• Unrestricted type females benefit from passing the genes of men with greater reproductive success to their own offspring. To induce males to invest in their offspring they frequently engage in pretense and deceit, traits that are strongly associated with unrestricted sociosexuality.
• Restricted type females benefit from caring males who limit reproductive efforts to the females own offspring.
• Male sociosexuality evolved through competition. Males who do not succeed with an unrestricted socio-sexual orientation become Restricted.

How do you know your partner's sociosexuality?

Lynda Boothroyd showed that observers were able to identify restricted vs. unrestricted individuals from cues in thier faces. My audience successfully differentiated the Restricted and Unrestricted pairs from the same picture. Test yourself.

What does this mean for a relationship?

• Restricted socio-sexual personalities are more willing to remain in an unsatisfactory marriage. They are less likely to be drawn out of such a relationship by attractive alternate partners.
• For Unrestricted individuals long term stability in the relationship depends on the extent to which the partner is highly attractive and possesses high social visibility. Decisions to continue or terminate a relationship depend more on changes in the partners physical attractiveness and social status.

However, personality is not all in the genes. Genes contribute to the biological aspect of personality - temperament. Personality also has an acquired aspect - character. When fully developed, character defines the mature personality.

How do I know if my partner is cheating on me?

To return to the question. Asking the question indicates there are already boundaries being overstepped. It indicates an erosion of trust - a core component in any long-term relationship. That is what needs to be addressed.

Jeffry A Simpson, Steven W Gangestad. Personality and sexuality: empirical relations and an integrative theoretical model. In: Sexuality in close relationships. Kathleen McKinney, Susan Sprecher Editors. Lawrence Erlbaum Associates. New Jersey. 1991:71-92.

Early Intervention in Autism - it works

Autism, in its broadest interpretation, has a prevalence of about 1:110 population. There is a severe shortage of early intervention facilities for persons with autism in India. World Disability Day is commemorated on 3rd December. Autism is not specifically included as a disability in the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. This may be contributing to the lack of funding for early intervention facilities.

Protodeclarative pointing - joint attention

 Disability in autism manifests during infancy in three domains

1. Social - Infants with autism show delays in smiling, gazing at their mothers and responding to their names and gesturing (e.g., pointing, waving bye-bye). This pattern continues, with the most impaired children growing to be avoidant or aloof from all social interaction.
2. Communication - Infants and toddlers with autism have delays in babbling, using single words, and forming sentences. Effective language acquisition and use remains a problem throughout life. 50% of people with autism never learn to speak.
3. Behavioural - Children with autism have difficulty tolerating any changes in routine leading to frequent tantrums. They display repetitive movements of the hands in front of the face, later giving rise to other peculiar and stereotyped movements and behaviours that stigmatise them as individuals.

These disabilities affect the ability of the person with autism to live independently and to carry out normal day-to-day activities of life

Various treatments clamour for the attention of parents of children with autism. These include HBOT (Hyperbaric oxygen therapy), chelation, animal therapies (dolphins, horses), various diets, and secret therapies. Despite celebrity and other endorsements there is no unbiased evidence that any of these therapies is effective, they are never curative. At best they are harmless and provide some diversion for the child and caregivers, at worst they can be life threatening.

Early intervention is effective in autism (Dawson et al 2010). The earlier the intervention the better. Effective early intervention programs can reduce disability to the extent that after two years nearly 30% of affected children no longer meet the diagnostic criteria for autism. There are numerous programs based on different philosophies and strategies, but most have some common components. Educational and behavioural techniques form the mainstay of these programs. Family involvement is essential. There is currently no evidence that any one program is better than the other.

Educational interventions

• Most programs involve 15 to 25 hours of intervention a week. They capitalize on natural tendency of children with autism to respond to visual structure, routines, schedules, and predictability.
• Good programs incorporate the child’s current interests and actively engage the child in a predictable environment with few distractions.
• They incorporate effective and systematic instructional approaches and use standard behavioural principles. The aim is generalization and maintenance of skills learned in therapy to life situations.

Behavioural interventions

• Challenging behaviours are managed with functional behavioural assessment and positive behavioural supports

Before starting on an Early Intervention program parents should check that the program

1. Is conducted by qualified professionals
2. Addresses deficit areas

• Inability to attend to relevant aspects of the environment, shift attention, and imitate the language and actions of others
• Difficulty in social interactions, including appropriate play with toys and others, and symbolic and imaginative play
• Difficulty with language comprehension and use, and functional communication.

3. Focuses on long-term outcomes

4. Considers individual developmental level and formulates goals.

I understand the anxiety of a parent confronted with a diagnosis of autism in their child. Unfortunately there are no quick-fix treatments or miraculous cures. Early intervention is time consuming and labour intensive, but in the long run it pays off.

Geraldine Dawson, Sally Rogers, Jeffrey Munson, Milani Smith, Jamie Winter, Jessica Greenson, Amy Donaldson, and Jennifer Varley. Randomized, Controlled Trial of an Intervention for Toddlers with Autism: The Early Start Denver Model. Pediatrics 2010; 125: e17-e23