By Professor Michael Ego
University of Connecticut- Stamford
The text below was developed from the address presented at a one day symposia on Sport, Dementia and Mental Health hosted by The Scottish Football Museum in partnership with the University of Edinburgh.
Dementia can be caused by a number of different diseases, the most common being Alzheimer’s Disease. The cognitive and functional losses are exacerbated by stereotypes and stigma – as the world sees a person almost totally lost once he or she receives an Alzheimer’s diagnosis – lost both to themselves and to those who love them.
The stigma attached to dementia can be observed when the general public’s body reactions to the word when it is pronounced before them. Some associate dementia as a contagious disease (i.e. infectious) and steer away from any physical proximity, just in case they may catch the disease. Others will not admit that there is a friend or relative with the disease, since it would show shame about their family. Fact: Dementia is not an automatic condition of human ageing.
Alzheimer’s and other dementia-related illnesses have a devastating impact on American society and culture – impacting an estimated 5.2 million American citizens each year. The media coverage of this disease has primarily focused on the Cause and the Cure – with the third C – Compassion – mostly seen as third fiddle in the discussion.
The research that has been conducted on the Cause have pointed to what is considered “risk factors.” Age is one factor, in that persons over age 65 are likely to have the disease, as compared to during young adulthood or middle adulthood. Family history portends that persons who have a parent or sibling who has the disease are two to three times more likely to develop the disease, but not a guarantee that genetics is the cause.
The third category is lifestyle patterns, that include head injury, lack of exercise and a healthy diet, avoidance of tobacco, limiting alcohol consumption, staying socially active, and engaging in intellectually stimulating activities, and there is an association between heart health and brain health. In summary, there is NO evidence that there is a definitive causation that may PREVENT someone from developing the disease.
The “C” that has got most of the attention is Cure. Although there are some drugs that been developed to ameliorate the disease in the early stages of diagnosis, as of this time, scientists have not been able to discover the proper drug to cure the disease. Recently, there was an announcement by one of the pharmaceutical companies that a highly anticipated “trial” for a drug that might cure the disease was not successful. So, we are still awaiting good news about a discovery as a cure to dementia.
The third “C” is Compassion. During the past four years, I have been investigating the reasons for the third “C” being seen as an afterthought, in most cases. Of course, American society wants to know what causes the disease, and also the cure that will save people’s lives. But, unfortunately, Compassion is not shown by those who do not have the disease, towards those that do, nor towards the families with a person with the disease.
I began to investigate how Compassion was displayed regarding dementia by countries around the world. I found there is attention being given to non-pharmacological interventions to enhance the quality of life for those individuals with dementia. Sports and related activities have made a valuable contribution to provide experiences that are beneficial to the lives of persons with dementia.
In my exploration of societal efforts that demonstrate Compassion led me to Scotland. There, starting in 2009, socialization programs were initiated to enhance the quality of life for men with dementia.
The programme, entitled “Football Memories,” was begun by Michael White, who had several friends with dementia, and who also were soccer fans. Since the inception of “Football Memories,” there are currently 185 support groups, consisting of volunteers throughout Scotland (a population of 5 million people), who offer similar memories programs in Golf, Rugby, Cricket, Shinty and Movies.
I suggested In November 2016, at a symposium hosted by the University of Edinburgh (Academy of Sport and the Global Health Academy) and the Scottish Football Museum that Scottish society understood the challenges and struggles of those with dementia, and were responding with Compassion through the socialization programmes. I was particularly struck by the way the challenges were being met in terms of dealing with, and helping people living with dementia through the medium of the Gaelic language – materials being prepared bilingually and work being done using both English and Gaelic where appropriate. This was highly cost effective and beneficial to a significant number of people.
In comparison, in the United States (with a population close to 325 million people), I have found two programs that have initiated sports memories programs: the Baseball Reminiscence League in St Louis, MO, and the BasebALZ League in Austin, TX). I have observed both programs and there is a genuine display of Compassion by the volunteers and the sponsoring organisations. In January, a third Baseball Reminiscence League will begin in Cos Cob, a collaboration between the River House Adult Day Care Center and the University of Connecticut.
In conclusion, I am not advocating that we dismiss the two C’s – Cause and Cure. We must continue to explore both dimensions that will help us to prevent dementia and to find a remedy for the disease. As we await the answers to Cause and Cure, let us show Compassion to those who have the disease and for their families and friends.