Friday, December 31, 2010

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.

8 comments:

  1. Neville,
    On another note, As our parents and loved ones grow old, some even facing dementia/ alzheimer's ... our roles now must change from being cared for, to being the caregivers. With the nuclear family.. everyone so busy with their own lives and family it is a challenge..
    In the past social stigma may have prevented people from putting their loved one in a home... but at the same time, its so easy to make our elderly still be 'alone' and feel like a burden.
    cyn

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  2. Cyn, it is a challenge. Caring for a relative with an illness like dementia is always going to be difficult. Yet I have time and again seen a spouse or a son manage it single handed. Placement in a mental health nursing home or other rehabilitation centre makes good sense. What is problematic is the quality of care on offer. In the developing world, including Pune, there are very few good options. But their availability would go a long way towards improving caregiver satisfaction and lessening the burden of care.

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  3. Very good article Neville. All points are dead on.

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  4. Thanks! Your comments keep me focused.

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  5. Dear Neville
    I appreciate your article. It is quite useful.I have a special child, 15 year old son with autism.Looking after a special child is a very demanding job physically and mentally. But now i am totally at peace with myself and i manage to enjoy my child's company. Only thing which is irritating is people's misplaced sympathies. Thanks for the article.

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  6. Dear Dr Misquitta,
    A group of us caregivers [for old parents, with illnesses including dementia] have recently started an online caregiver support group at http://groups.google.com/group/care-circle/

    Its for, of and by caregivers so as to address our unique issues and at present has members from Pune, Bangalore, and Delhi.

    All caregivers are welcome to join, share and ventilate. There's plenty of humor and courage to see in the circle. It has helped me a lot in coping with caregiver stress, and taught me to count the myriad blessings in my situation. I feel such support groups can be a real blessing, especially when the going gets tough.

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  7. Excellent! We need to do things ourselves rather than wait around to have it done for us.

    Self-help groups are a good pool of local knowledge. The sense of belonging, sharing and being understood by the group are a major source of strength for its members. Shashie, this is great work.

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