What does the General Public Know About Aphasia

Aphasia Has a More Negative Impact on a Person’s Quality of Life than Cancer or Alzheimer’s Disease.

Lam and Wodchis (2010) recently conducted a large study of health-related quality of life (HRQoL) in 66,193 residents in hospital-based long-term care in Ontario, Canada using the minimum data set Health-Status Index (MDS-HSI), a universally used measure based on a range of clinical assessments in all North American long-term care facilities. Their analysis estimated the impact of 60 diseases and 15 conditions on HRQoL. Aphasia showed the largest negative relationship to MDS-HIS, followed by cancer and Alzheimer’s disease.

That means that aphasia had a larger negative impact on a person’s quality of life than cancer or Alzheimer’s disease.

Such dramatic demonstrations that aphasia has one of the most massive negative effects on an individual’s quality of life and their ability to engage in and with their family, friends and wider community should galvanise service providers into actions that result in significantly improved services for people with aphasia.

The next stage must be to ensure that those who have the power to influence the provision of services from health and social systems are fully aware of the impact that aphasia can have and the impact that services for aphasic people and their relatives can have.

Highlights from Published Research

Phone surveys in the UK asked respondents if they heard of aphasia.

  • Speakability  (2000) conducteda phone survey of 1005 people balanced for class, age, sex and regions of the UK, who were asked what they knew of aphasia. Only 3% (32 people) answered appropriately. When provided with a basic definition of aphasia, 21% (213 people) knew or had known someone with aphasia, and this figure increased with age.
  • The Aphasia Alliance (UK) ran a phone survey of 2000 people in the UK. Over 90% had never heard of aphasia and 79% could not distinguish aphasia from ‘skin disease’ or ‘a fruit’.

Face-to-face survey asked respondents if they heard of aphasia in 13 different countries.

  • Surveys were completed with shoppers in Argentina, Australia, Canada, Croatia, Greece, England, Inda, New Zealand,  Norway, Slovenia, Turkey and the USA. All shoppers who were surveyed were asked…
    • if they had heard of aphasia
    • how much they knew about aphasia
    • where they had heard about aphasia.
  • Different counties had different levels of public awareness of aphasia, but most had low levels.
    • An average of 7.34% in these countries had some knowledge of aphasia.
    • Most people learned about aphasia from newspapers, magazines, TV and radio.

Aphasia awareness in 9 countries.

  • In 5 of the countries, most people had no knowledge of aphasia (similar to English-speaking countries)

No knowledge versus basic knowledge of Aphasia in 5 countries.

  • In all 8 countries surveyed, most people heard about aphasia from newspapers, magazines, radio and TV.

8 countries surveyed about where they heard about aphasia.

Important for awareness raising is the community and places aphasic people spend most of their time.

  • People who have been aphasic for some time spend most of their time with family and friends, in shops, restaurants and pubs, and other community activities.
  • They spend much less time with health care professionals or with social services (Code, 2003).

Hours spent in activities.

Selected Citations from Peer-Reviewed Research Journals

Code, C. et al. (sumitted) International patterns of the public awareness of aphasia.

Code, C. (2003) The quantity of life for people with chronic aphasia. Neuropsychological Rehabilitation, 13, 379-390.

Code, C.  Simmons-Mackie, N., Armstrong, E., Stiegler, L., Armstrong, J., Bushby, E., Carew-Price, P., Curtis, H., Haynes, P., McLeod, E., Muhleisen, V., Neate, J., Nikolas, A., Rolfe, D., Rubly, C., Simpson, R. and Webber, A.  (2001) The public awareness of aphasia: an international survey. International Journal of Language and Communication Disorders. 36 (Suppl.), 1-6.

Elman, R., Ogar, J., & Elman, S. (2000). Aphasia: Awareness, advocacy, and activism. Aphasiology, 14, 455–459.

Flynn, L. Cumberland, A., Marshall, J. (2009). Public knowledge about aphasia: A survey with comparative data. Aphasiology, 23, 393-401.

Lam, J.M.C. & Wodchis, W.P. (2010) The relationship of 60 disease diagnoses and 15 conditions to preference-based health-related quality of life in Ontario hospital-based long-term care residents. Medical Care, 48, 380-387.

Mavis, I. (2007) Perspectives on public awareness of stroke and aphasia among Turkish patients in a neurology unit. Clinical Linguistics & Phonetics, 21, 55–70.

McCann, C., Tunnicliffe, K. & Anderson, R. (2012). Public awareness of aphasia in New Zealand. Aphasiology, 27, 568-580.

Patterson, R., Robert, A., Berry, R., Cain, M., Rochon, E., Iqbal, M., Leonard, C. & Code, C. (In Press), Raising public awareness of aphasia in southern Ontario, Canada – a survey. International Journal of Speech-Language Pathology.

Simmons-Mackie, N., Code, C., Armstrong, E., Stiegler, L. &  Elman, R. (2002) What is Aphasia? Results of an international survey. Aphasiology, 16, 837-848.

Researchers Around the World Conducting Surveys of Public Awareness of Aphasia Include:

Beth Armstrong,
Edith Cowan University, Australia

Chris Code,
University of Exeter, UK

Roberta Elman,
Aphasia Center of California, Oakland, USA

Line Haaland-Johansen,
Bredtvet Resource Centre, Oslo, Norway

Ana Leko & Tatjana Prizl-Jakovac,
University of Zagreb, Croatia

Ilias Papathanasiou,
Technological Educational Institute of Patras, Greece,

Silvia Rubio-Bruno, María de la Paz Cabana and Maria Marta Villanueva, 
Fundación, Argentina de Afasia, Argentina

Nina Simmons-Mackie,
Southeastern Louisiana University, USA

Nada Zemva,
University Rehabilitation Institute, Ljubjana, Slovenia

Marjolein Zomerdijk,
Sophia Revalidatie Delft, The Netherlands

Gloria Streit Olness and Emlynn Chazhikat,
University of North Texas, USA

Elizabeth Rochon,
University of Toronto, Canada

Ruth Patterson,
York-Durham Aphasia Centre, Ontario, Canada

Simon Horton,
University of East Anglia, UK

Darek (Bosydar) Kaczmarek,
Poland

Ognjen (Ogi) Todic,
San Francisco, CA, USA

Violet Cox,
State University of Ohio, USA

Clare McCann,
University of Auckland, New Zealand

Ellayne S. Ganzfried,
National Aphasia Association, USA