Recently, I’ve been reading novels that include a family member developing early onset dementia (onset before the age of 60 years) and the necessity of one of the characters (usually the son or daughter) to take over the care. The information seems to be plunked down with no description of possible risk factors—certainly a big cause of fear for every other family member—and little description of the effect on the person’s life and on the caregiver. Just think of someone younger than 60 years. An energetic time for most and certainly too young for retirement. They’ve got things to do and places to go. The person’s children are in their 30’s and there are probably young grandchildren.
As a retired psychiatric nurse I turn the pages frantically looking for the writer to provide more information about the afflicted member and the impact on the family member assuming the caregiver role.
It occurred to me that readers want to know and writers need to address three vital questions:
1. What are the predisposing factors? What in the character’s backstory might have contributed to his developing the illness? Do I have those risk factors?
2. What are the protective factors? Family members wonder what can I do to avoid the same illness?
3. What is the effect of the illness? What would the effect be on me: my career, my savings for the future, my children’s educational funds, my marriage, and my plans for retirement.
In writing about early onset or late onset dementia, it should be remembered that it is a gradual process. Mild cognitive impairment is believed to be a preclinical phase of dementia. People with mild cognitive impairment have impaired memory for recent events but they also frequently have apathy, depression, irritability, and anxiety. They may appear to be agitated without cause. The onset of mild cognitive impairment may be followed by dementia, often within three to five years.
• Lower level of education
• Fewer stimulating mental activities
• Less physical exercise
Protective factors include:
• Higher level of education achieved
• Being employed or volunteering
• Engaging in physical exercise
• Maintaining good health
• Having an active social support network
• Not smoking
• Having one glass of alcohol a day
Effect on Others
Family members often notice that the person has difficulty remembering future commitments and the family begins to compensate for person’s inability to remember things.
Dementia is an impairment of cognitive functioning—thinking, reasoning, knowing, and memory-- that is severe enough to cause problems with communicating, self-care, and functioning at work, within the family, and within social situations.
Predisposing factors for dementia that occur in middle age:
• History of trauma to the head: repeated injuries to the head, concussions
• Cigarette smoking
• Physical inactivity
• High cholesterol,
• High levels of academic achievement
• Mediterranean diet
• Engaging in intellectually challenging activities
• Engaging in physical exercise
• Moderate use of alcohol (one glass a day)
Predisposing factors for dementia that occur at old age
• Cigarette smoking
• Head injuries, especially head injuries from falls
• Social isolation and loneliness
• Medications with anticholinergic effects
Protective factors for dementia that occur at old age
• Following a Mediterranean diet
• Drinking wine daily in moderation (one glass)
• Maintaining physical activity
• Engaging in cognitively stimulating activities
• Engaging in leisure activities: music, walking, visiting friends, reading, volunteering, playing games with friends
• Maintaining social networks
Effect of dementia on others
Grief over the loss of a partner, a relationship, and a shared dream of the future,
Guilt over losing patience with the person with dementia.
Guilt for not being able to keep promise to care for them at home,
Anger over changes, financial burden, and lost opportunities associated with caring for the ill person.
Fear of being at increased risk of developing dementia, and
Fear that dementia in the family may jeopardize chances of marriage for younger family members.
Writers often hint at a genetic influence as the cause of the development of dementia, but if they would include the presence of other risk factors or absence of protective factors in the back stories of their troubled characters and would describe broader effects on the caregiver, their stories would be richer, more compelling.
Here is a brief intro to one of my romance novels that deals with some of these issues. I hope you enjoy it.
At some time in our lives, many of us will be refugees--people fleeing from traumatic situations such wars, earthquakes, fires, floods, or the aftermath of debilitating illness, death, divorce or betrayal. Help for some may come from family members, friends, and spiritual leaders. Within the medical profession, it is often psychiatrists who help those who have been traumatized by such events. No Greater Love is a contemporary, international romance featuring a psychiatrist and a nurse who help those who are refugees only to discover that they are the only ones who can save each other. The story moves from East Aurora in Western New York to Leiden and Amsterdam in The Netherlands.
When Pieter, a young Dutch psychiatrist who Carl mentored, comes to Buffalo to be evaluated at Roswell Park Cancer Institute, he meets Janan and knows the sweet power of love for the first time. He also knows that, even if he lives, treatment for leukemia may leave a man unable to father children.
Realizing she has fallen in love with Pieter and fearing that life is passing her by, Janan asks him for one night. During that one night, cloistered in Room 203 of the venerable Roycroft Inn, Pieter teaches Janan the eight different kisses of seduction. It is a night that changes the lives of all.
As an impoverished student nurse at Albany Hospital, Eris met her future husband, an equally impoverished Turkish surgical intern who told her fascinating stories about the history of Turkey, the loss of the Ottoman Empire, and the painful experience of forced population exchanges.
After years of working as a nurse, teaching psychiatric nursing, and raising a family, Eris now writes novels--international, contemporary romances that incorporate her interest in psychiatry, history, people from different cultures, and the problems of refugees.
Although the characters in Eris’s novels are often from other countries—The Netherlands, Turkey, and Kurdistan— her novels are usually set in Western New York--The land of Father Baker, Jericho Road Refugee Center, the Buffalo Bills, Wings, and snow--chunky rain snow, lake-effect snow, horizontal snow, the snow of thunder snow storms, dry, fine snow, curtains of wet heavy snow, and whiteouts.
Learn more about Eris Field on her website. Stay connected on Facebook.