Thursday, September 27, 2012

Alzheimer's caregiver techniques


world alzheimers day 2012

Caregivers living with persons having Alzheimer's Disease face specific problem behaviours. These behavioural problems result from memory loss that is the hallmark symptom of Alzheimer's. We have previously discussed resources giving hope for dementia caregivers. Caregiver do's and dont's for mental illnesses in general have also been highlighted. Living with Alzheimer's Disease is the theme for World Alzheimer's Day 2012. In this post we specify methods to help caregivers living with persons having Alzheimer's handle problems related to memory loss and reduce the burden of  care at home.

Caregiver techniques for Alzheimer's

  1. Regular routine enables basic activities of daily living for a longer period of time. Make a visual time-table and regularly remind the person with Alzheimers to consult it so it becomes a habit.
  2. Keep large clocks in each room and remind them of the time at every opportunity.
  3. A personalised calendar with large figures helps plan and anticipate potentially confusing events such as a festival or travel.
  4. A room with a window is great for orientation. Natural daylight and dark phases maintain the sleep-wake cycle.
  5. Greet at every new meeting with date and time. The date is particularly difficult for a person with Alzheimer's to learn - it changes every day -  hence the disorientation. Repetition will keep the person with Alzheimers disease current with the month and year for longer.
  6. Keep familiar objects like photos, phone, books, and decorative pieces in the same place. People with Alzheimer's often have to move from one set of caregivers to another. Placing these objects in the same general positions helps them to avoid confusion and  anxiety.
  7. Photographs are important visual memory pegs. Two or three frames with photographs of the caregiver families and old friends reassures the person with Alzheimer's disease and facilitates their smooth transition between caregivers.
  8. An identity card is essential for every person with  Alzheimer's. It must contain an address and an emergency contact number. It should be worn at all times, even inside the  house. Your loved one can wander out of an open door and not  be able to find her way back. Reinforce and rehearse showing or consulting the identity card on being asked for address or phone number.
  9. Encourage and let them do the  things they can. Don't take over every activity or your caregiver burden will increase. Prompt them when they hesitate or take time. Help them in those activities they are unable to do.
Anti-dementia drugs delay nursing home admissions for upto a year. To make home this stay meaningful and to reduce the burden of care these methods need to be used by caregivers living with Alzheimer's Disease patients.

Sunday, December 11, 2011

Hope for dementia caregivers - ARDSI Conference Pune 2011

dementia caregivers training

Training for caregivers of persons with Alzheimer's disease helps address the distressing behaviours that arise in the affected person. Caregiver training also promotes wellness in caregivers by giving them the skills to  handle the relentless stress. Unfortunately most caregivers are unaware of the need or the availability of resources. The Alzheimer’s and Related Disorders Society of India (ARDSI) held its 16th conference in Nov 2011 at Pune. This significant event marked Pune’s arrival on the national dementia caregiver stage. Pune is now the 16th Indian city with an ARDSI chapter of its own. How does this help people with dementia (PwD) and their caregivers? The ARDSI Pune chapter “develops, coordinates and renders services in the field of dementia care, support, and training”.

The training aspect is particularly interesting. Conversations with caregivers at the clinic usually swing around to the day-to-day nitty-gritty of dealing with dementia, the impaired activities of daily living (ADLs) - keeping the person engaged, getting them to bathe, preventing them from wandering. Members of other fully functioning chapters whom I met at the conference animatedly discussed the caregiver training workshops and courses they held on a regular basis. These local courses are exactly what the doctor ordered - education for understanding and hands-on caregiver training.

The Dementia India Report 2010 was extensively quoted by many of the conference speakers. This document has dementia related statistics specifically for India and its states, and is an essential resource to leverage for obtain funds for dementia related activities. It also has details of services available for people with dementia - unfortunately data on support groups is as yet not available.

Caregiver training is a thrust area in dementia management. The 10/66 Dementia Research Group has developed a training package with a set of manuals, detailed instructions and a training video for caregivers and caregiver training. These are available for anyone to download after providing an email id. They provide a template that can be used by any individual or organisation involved in caring for persons with dementia.

The ARDSI conducts two geriatric care training courses; a six month certificate course and a one year post-graduate diploma course at its centre in Cochin. The number of persons with dementia in India is assessed to be 3.7 million in 2010. The ARDSI and similar courses will provide a pool of trained workers to care for the needs of people with dementia and their caregivers. This pool of personnel is not just on paper. The conference was over-booked. Extra seating had to be provided to accommodate the 100+ last minute attendees in the 400 seater main auditorium. Most of them were trainee social workers entering the field in time to meet the growing demand for their services.

References
  1. 10/66 Dementia Research Group. Resources for caregivers and caregiver trainers
  2. Alzheimer’s and Related Disorders Society of India (2010). The Dementia India Report: prevalence, impact, costs and services for Dementia. (Eds) Shaji KS, Jotheeswaran AT, Girish N, Srikala Bharath, Amit Dias, Meera Pattabiraman and Mathew Varghese. ARDSI, New Delhi. ISBN: 978-81-920341-0-2 

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.