PERSPECTIVES ON ADVOCACY: Strength in Numbers
By Cynthia Janus, M.D., author of THE ALZHEIMER’S CATASTROPHE: The Long Uphill Battle Against Alzheimer’s Disease and Why We Can’t Afford to Lose
People who are diagnosed with dementia, and those who love them, embark on a challenging journey as the lives they had previously imagined are changed forever. I know this because I was on this journey for at least thirteen years with my husband, who had dementia, ultimately diagnosed as Alzheimer’s type.
In the case of Alzheimer’s disease, the most common form of dementia, there are more questions than answers as to its exact nature and cause (or causes), its progression, and how best to monitor its course with biomarkers and imaging. It is well known by now that medications used to treat Alzheimer’s are helpful for only a short period of time and do not work for everyone. Some have set a deadline date for finding a cure but, in my opinion, this is unrealistic. Aside from the efforts of many bright and dedicated researchers whose goals are humanitarian and altruistic, the profit motives of drug companies and the quest for fame and glory by others will act as incentives and serve to spur research. However, even after any such discovery of an effective treatment, it will take an unknown number of additional years to find out if a newly discovered medication is really effective and safe. Meanwhile, all we can do is support research and “hope for the best”.
We can, however, impact the lives of people with dementia right now through education and advocacy efforts. No two people with dementia have the exact same experiences, expectations and coping mechanisms. Likewise, reactions of individuals to someone else’s dementia can vary greatly. In the best of worlds, people with dementia can continue to engage professionally and socially for as long as possible with some modifications. Sadly, however, they have too often been overlooked, isolated and treated as a source of embarrassment. Many people are uncomfortable, and some are plain insensitive, in the presence of someone with dementia. These reactions cut across age, sex, ethnicity, educational level and profession.
I remember a soft spoken geriatrician who was informative and realistic yet encouraging when speaking to us and I recall many physicians who seemed to have trouble looking my husband, Sam, in the eye. There was a speech pathologist who gave us very useful recommendations and always made us feel that obstacles could be overcome but I also remember a neuropsychologist who spent the better part of an hour telling us only about all the things that Sam would not be able to do. There was the real estate agent who answered with great annoyance a question posed by my husband with, “You’ve asked me that three times already!” I remember a well meaning family friend who insistently, but mistakenly, tried to correct Sam on the meaning of a word because he did not know Sam’s substitution word for the object. In another instance, a friend invited me to her house for coffee and then brusquely banished her elderly mother with dementia to her bedroom, even though I said I was perfectly happy and comfortable with her mother in the same room. These types of situations occur routinely for people with dementia and I could go on and on…
We can change negative attitudes by bringing the subject of dementia out of the darkness, by disseminating knowledge, and by sharing experiences and ideas from people directly and indirectly affected. Northwestern University in Chicago pioneered a buddy program between patients with dementia and doctors in training for a one year period. This novel type of real life learning experience should be expanded to other types of training programs for physicians and nurses. We also need to encourage social interaction for people with dementia and maintenance of as much autonomy as their condition permits. Along these lines, some communities have fostered social and support groups.
For those residing in a nursing home or other type of long term care facility, the situation is particularly discouraging. With no effective treatments, the needs of many people with advanced dementia may ultimately exceed the capabilities of their families and friends and they are forced into long term care facilities, typified by the nursing home. Approximately 70% will spend their last days there. These institutions are often understaffed and the employees may have little or no training in caring for people with dementia. Generally, residents in nursing homes are not treated as unique people with individual needs and preferences. They have no say about their daily activities and are forced to comply with the rigid schedule of their facility. Their inability to express themselves in terms the staff understands is categorized as a behavior problem and often treated inappropriately with atypical antipsychotic medications.
Life in a long term facility, especially for those with dementia, is non-stimulating, depersonalizing and can be frightening. This is an area where advocacy and reform is desperately needed. Strategies and programs should be created to allow people with dementia to live at home for as long as possible and this will require some type of assistance, including financial aid, for the family or friends that comprise their crucial support system.
For those who are no longer able to remain at home, long term care facilities should be flexible in their thinking and staffed by people who are compassionate and well trained in all the complex aspects of dementia care and this should be the standard of care. Unfortunately, reform of long term care for people with dementia seems to be as elusive a goal as finding a medical cure. Nevertheless, we should fight against the forces of greed and inertia embedded in the current system to improve the quality of life for nursing home residents with dementia. We can also advocate on a personal basis, by remaining vigilant and involved and by insisting that our loved ones in these facilities receive good medical care and are treated with dignity.
Those with dementia should know there are a lot of people who “have their back” at every stage of the process and who will help them to live the best life possible, something we all want for ourselves. There really is strength in numbers!