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The burden on those caring for older people with either dementia or long term physical conditions is well recognised. It can cause significant emotional (and physical strain).

In the United Kingdom there is support available (albeit it patchy), which can potentially ease the strain on carers. Support systems include respite and care homes, district nurses, financial benefits, day centres, home care, sitting services and access to medical professionals (in their own home if necessary)¹. In many developing countries however, few if any of these resources are available for patients with dementia and as a result, the family is often left unaided to provide care.

Hospital environment
Having recently spent a month as part of my elective in a district hospital in Ethiopia, apart from the huge cultural differences, I had the opportunity to experience the stark contrast between practice in the UK and this resource limited setting. The hospital wards were inevitably cramped with little or no privacy and many patients were on beds in the halls and grounds. There were few hygiene precautions. Insects crawled over the walls and the patients. Hand washing was minimal. The mindset was summed up by one doctor who said to me, “We are more worried about HIV; our bodies are used to the other dirt”.

Patients relied on relatives for food and personal care as well as paying for and collecting drugs or equipment from the pharmacy. There was a primitive referral system but most patients booked into the most relevant clinic themselves, resulting in an average of 40 patients per clinic, run by junior doctors. There was no triage. One case I observed involved a patient with a fractured femur, who was only seen quickly because their relative had used a little elbow power to push to the front of the queue. Blood tests and basic radiology were available, but at a price. Apart from review clinics, there were no resources for long term chronic conditions such as carers, transport, respite or day centres, secondary care or financial allowances. The patients seemed resigned to waiting, to not understanding why they were ill and accepting any treatments and outcomes to incorporate into their own cultural-bound coping mechanisms.

The demographics of Ethiopia show a rapidly growing population with a life expectancy of 53 years, 2.7 per cent of the population are over 65. The average household size is 4.8, with 85 per cent living in rural areas, 47 per cent living below the poverty line and a total adult literacy rate of 36 per cent².

Seeking healthcare
Many Ethiopians present late in the course of their illness to government hospitals. Therefore relatively old people present much later in the disease progression as they become unable to cope with failing biological compensation mechanisms. Spiritual and religious beliefs as well as financial matters influence the health seeking behaviour and promote practices that can be ineffective and dangerous. Mental illnesses, including dementia are socially stigmatised so that efforts are made to hide or ignore the patient’s condition until it progresses to a stage where it can no longer be ignored. At this point the family members will usually take their aged relative to a traditional healer in the first instance. These people give holistic care that is in keeping with cultural and religious beliefs but is unlikely to improve the patient’s condition. This is partly due to the logistics of the proximity to the traditional healer both physically and culturally. There is also the belief however, that psychiatric conditions are not amenable to the same type of management seen in other medical conditions and that there is no cure and so no efficacy in visiting the doctor. Eventually patients with significant illnesses, including dementia, will present to government hospitals. By this stage any significant improvement may not be possible with education and advice being the most that can be offered to carers. This is the extent of formal care for the dementia patient in Ethiopia, there are no secondary care facilities, day centres or district nurses, GP or professional carers to do home visits, all long term care is provided by the family, friends or not at all.

The role of the family
Traditionally the family unit is large. Children are seen as being able to provide extra income and usually don’t move far from the family once adult. When a family member becomes ill, it is seen as the entire family’s responsibility to care for that person. Dementia, however, with its longer course, gradual progression and reduction in functionality, can place a protracted and heavy burden on the family members who may have children to look after, crops to tend or other paid and unpaid commitments to keep, in order to provide for the whole family. Being responsible for the full time care of a family member with minimal function and severe behavioural difficulties can require that the relatives reduce their working hours in order to take on the carer role - compounding the financial strain on the family.⁵ This increased burden often results in the carers adopting unfortunate solutions, such as physical restraint using ropes and chains as a means of dealing with behavioural problems and to prevent wandering and self-harm. Psychiatric nurses often report observing marks on the wrists and ankles of their dementia patients but this is common practice.⁶ The Ethiopian people have a pragmatic outlook. Using physical restraints to prevent the more destructive aspects of dementia releases family members to pursue education and to work to feed the family⁸.

Psychiatric services in Ethiopia
The only psychiatric hospital in Ethiopia is the Amanuel hospital in the capital, Addis Ababa, with 360 inpatient beds and 10 psychiatrists. There is also an outpatient referral system in which patients wait at the gates to be seen. As many as can be seen that day are allowed entry, whilst the remainder have to return the following day. Those who present with acute psychosis are given priority but are still put on a waiting list of up to two weeks.

In 1997 a programme was introduced to train psychiatric nurse specialists who would practise in the district hospitals, seeing, prescribing and following up patients on an outpatient basis⁹. This potentially allows carers to benefit from instruction on how to care for the patient.

As might be expected, the system has been implemented with only variable success. There are a few inpatient psychiatric beds available in the district hospitals, but if patients can afford it, such beds are usually on a general ward with no psychiatric specialist provision. This system appears to be a first step in establishing a mental health presence in the general medical setting in the hope that these foundations can evolve into more specialist centres with appropriately trained staff so that family members and the community are not forced into an intense caring roll with the attending impact on the family’s resources.

Stark contrast
As in much of Africa, Ethiopia is an intensely poor country where many people are deprived of what the developed world sees as basic human rights, but which for an Ethiopian is an inconceivable luxury. Until the population has reliable access to food, shelter and water, concepts such as hygiene and dignity for dementia sufferers are mere frivolous abstractions.

Suzanne Howell
5th Year Medical Student
University of Birmingham Medical School

References

1. NICE guidelines: Supporting people with dementia and their carers in health and social care [Online] 2007 [cited2009 June 28th] Avaliable at: URL:http://www.nice.org.uk/nicemedia/pdf/CG42Dementiafinal.pdf

2. Federal Democratic Republic of Ethiopia Ministry of Health: Country background [Online] 2009 [cited 2009 June 8th].
Available at: URL: http://www.moh.gov.et

3. Alzheimer’s Society. Caring for a person with dementia [Online] 2009 [cited 2009 June 28th] Available at: URL: http://alzheimers.org.uk

4. Department of Health; Dignity in care campaign [Online] 2006 [cited 2009 June 8th] Available at: URL: www.dignityincare.org.uk

5. The 10/66 Dementia Research Group. Care arrangements for people with dementia in developing countries. International Journal for Geriatric Psychiatry; 19; 2004; P170-7

6. Bredthauer D. Et al. Factors relating to the use of physical restraints in psychogeriatric care: A paradigm for elder abuse. Journal for Geronotologie und Geriatrie; Germany; 3;2005; P10-8

7. The Mental Capacity Act; Deprivation of Liberty safeguards. Department of Health; UK; 2007

8. United Nations: Human Rights [Online] 2009 [cited 2009 June 8th]
Available at: URL: www.un.org/en/rights/

9. Alem A. Human rights and psychiatric care in Africa with particular reference to the Ethiopian situation. Acta Psychiatry Scandanavia;101; 2000

BGS Newsletter, November 2009
Issue 24 ISSN 1748-634000 24