Research - Alzheimer's/Dementia

Family Stigma and Caregiver Burden in Alzheimer’s Disease

Werner, P., Mittelman, MS., Goldstein, D., and Heinik, J.,(2011). The Gerontologist.  doi:10.1093/geront/gnr117

Caregivers of people with Alzheimer’s disease experience burden related to stigma, and this impacts the effectiveness of treatment to the person with the disease. The best way to address this stigma is to address stigma towards the Alzheimer’s disease. Read article here. 

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Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma

Vernooij-Dassen, MJFJ., Moniz-Cook, ED., Woods, RT et al (2005.) International Journal of Geriatric Psychiatry; 20,(4) 377–386. 

This European study, based on focus groups, concluded that healthcare providers delays in identifying dementia were based on a belief that there is little to do in the early stages of the disorder. Overcoming these delays requires looking closely at the process and underlying factors of stigma. Read abstract here.

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World Alzheimer Report 2012: Overcoming the stigma of dementia.

Batsch NL, Mittelman MS.  (2012.) Alzheimer’s Disease International.

In this report the authors explore the stigma of dementia by surveying people with dementia and their caregivers. Guest essayists contributed and literature was reviewed. They also identified stigma-reducing projects, and suggest that this must be the first step to improving the lives of people with dementia and their caregivers. Read report here.

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Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice

Phillips, J., Pond, C. D., Paterson, N. E., Howell, C., Shell, A., Stocks, N. P., … Marley, J. E. (2012). The British Journal of General Practice,62(601), e546–e553.

The authors explored the impact of stigma and other factors impacting general practitioners in Australia’s disclosure of dementia to their patients. Read article here. 

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Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

Garand, L., Lingler, JH., O’Conner, K., and Dew, MA., (2009.) Research in Gerontological Nursing 2(2):112–121.

The authors examine the impact of labeling and stigma on clinical research participation, and how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI. Read author’s manuscript here.

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Patient with Alzheimer’s Disease: A Neglected Dimension of Dementia Research

Cotrell, V., and Schulz, R (1993.) The Gerontologist, 33(2):205-211.

The authors recognize that historically researchers treat people with Alzheimer’s disease as objects, and don’t include their perspective in research. Here they examine the perspective of people with dementia in three research areas and identify research challenges and opportunities to increase understanding of dementia. Read abstract here. 

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Public Stigma: The Community’s Tolerance of Alzheimer Disease

Blay, SL and Toledo Pisa Peluso, E (2010.) The American Journal of Geriatric Psychiatry, 18, 2:163-171.

The authors interviewed 500 people in Brazil to assess levels of stigma related to people with Alzheimer’s Disease using stereotypes, prejudice and discrimination as qualifications. The authors concluded that dimensions of stigma were highly prevalent in relation to Alzheimer’s Disease, and that interventions are needed to reduce the negative effects of stigma. Read abstract here. 

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