Ethnicity and the Experience of Alzheimer's Disease
The needs of people from ethnic communities who have Alzheimer's disease have received little attention. This can easily be demonstrated by looking at the paucity of information in medical books, journals, and from published research papers. When the subject of ethnicity is addressed it is often very broadly defined. Yet ethnicity plays a very important part in the experience of dementia and how beliefs affect the ways people live with it.
We know that to have the best social, welfare and healthcare provision you have to have a broad knowledge of the people you are targeting. For example, you have to understand their social identity, economic disadvantage, their household and neighborhood structures, education and their understanding of health. You have to appreciate how people with health issues seek help and understand the barriers that people of color face when they look for help and support. Only then can you plan and put into place the most effective health care provision.
Interpreting Early Symptoms of Dementia & Seeking Help
The way in which symptoms of dementias such as Alzheimer's are viewed all affect healthcare provision. A study by Mahoney and colleagues in 2005 looked at how family caregivers interpreted the symptoms of dementia before they sought a diagnosis. People from six Latino communities, Puerto Rico, and five Central and South American countries, (to represent a broad cultural Latino heritage), African Americans, and Chinese family caregivers were interviewed. The researchers found across all three groups that the relatives initial impressions of their relatives memory loss was a normal ageing process. However their cultural explanations were very different. African Americans attributed it to, ‘old timer's disease', ‘mind slippage', for the Chinese ‘hu tu' (the forgetfulness of old age) was put down to bad ‘feng shui' (bad environmental energies) and for the Latinos the symptoms of dementia were ‘el loco', craziness.
All three groups normalized how they responded to their relatives when early symptoms started but, broadly speaking, each ethic group varied in how they dealt with them. African Americans, known to have a strong respect for elders, tolerated symptoms and used extended family members for support. A study by Kathleen Jet in 2006 said that people accessing health care for African Americans may need to learn more about specific idioms and their meanings. She says "instead of cognitive functioning, we can ask about mind slippage".
Ongoing care for African Americans is seen first as a family responsibility, then the responsibility of their community. Black Americans can mistrust outside help. Little wonder given their experience of prejudice and lower economic ability to access healthcare
Latinos protected their relative, not wanting to upset the person with symptoms. Latinos are twice as likely as the general population to be living in multigenerational households. Research has also shown that many Latinos see caregiving as a positive experience and this is reflected in families of people with Alzheimer's delaying institutional care.
Chinese people, in normalizing their response to symptoms, seek to protect by keeping the problem hidden to avoid social stigmatization. Chinese relatives found most hostility when they sought informal advice in their community because of the stigma.
This study and others have found that Chinese Americans may not share information about the person with others outside the family, social workers or healthcare professionals. Signs and symptoms of the disease may be minimized. Fate is a strong belief. Alzheimer's disease and other forms of dementia are seen as beyond their control and somehow inevitable. That it is the result of the sins of their ancestors.
These few examples of how people from different ethic backgrounds view types of dementia that include Alzheimer's disease is important. Cultural differences become important because each ethnic community brings with them their own ideas of the meaning of disease. Their household and neighborhood experiences, their economic disadvantages, their experience of racial prejudice, are all examples of how we can eliminate inequality. We need to know what different ethnic groups within our countries want, what healthcare they need and what preventative health promotion programs will get the messages across.
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