By Wayne Jebian
As Latinos pass the age-65 mark, they face many of the same concerns as the general population — broadly, the loss of independence and the possibility of dementia. However, the ways that Latinos and Caucasians deal with these issues is what sets them apart.
Delia J. González Sanders, chair of the Department of Social Work at Central Connecticut State University, is among the state’s top experts on dementia in older Latino populations, having authored the book Dementia Care with Black and Latino Families with her colleague, Dr. Rick Fortinsky. After studying this almost invisible world of families caring for older loved ones in the home, Dr. González Sanders was struck by how little concrete information is available about the needs of such families, describing a “black hole” in public services to this stratum of the population.
One thing that she does know, and charts in her book clearly show this, is that the percentage of Latinos will jump to nearly 20% (from 7% in 2009) of the United States’ over-65 population by the year 2050. “One of the reasons I wrote this book was to prepare for the population explosion that is coming,” she said.
The experience of Latino families is distinct from that of the general population, driven by an ethos that some call “Familismo” to take care of their own, not seek outside help, and to fiercely resist sending loved ones to nursing homes and other institutions if at all possible. The tendency to keep family matters private feeds the shortfall in relevant healthcare and social services in a kind of vicious circle, one characterized by self-sacrifice and lack of communication with social service and healthcare providers.
Language barriers, including a lack of bilingual doctors and clinicians and long-standing stigmas associated with the loss of mental faculties, keeps families and individuals struggling in isolation.
Dr. González Sanders describes a woman with an adolescent child of her own who moved into the basement of her parents’ house because her father had developed dementia and her mother had other health problems. The demands of caregiving and work caused this woman to neglect her own chronic health conditions.
Having a renal disease, she should have been receiving dialysis treatments multiple times per week, but she often deferred her own treatments and had cut her dialysis down to once per week. “There has to be care for the caregiver as well,” said González Sanders. “It’s not enough just to take care of the individual with dementia.”
Helping families who are caring for loved ones with dementia would look very different for Latinos than for Anglos, according to González Sanders. Conventional support groups, which bring strangers together to discuss their situations, would not work for most Latino families.
Instead, González Sanders recommends having a social worker or healthcare worker meet with the family to help organize care duties and delegate care-giving responsibilities.
Where insurmountable logistics or lack of available family members necessitate placing older adults into care facilities, those facing this decision feel “forced,” said González Sanders. “They feel like they have no other alternative because they physically can’t care for their spouse or loved one.” Both the prerogatives of Familismo and state budgets would be better served by having more home-care options available.
Nursing Homes Inadequate
Language issues and cultural barriers can throw additional challenges into the mix for families exercising the nursing-home option. Dr. González Sanders recounted the experience of a woman who had to place her husband of 40 years into a home with no bilingual staff. “He was being allowed to vegetate,” she recalled. “He was getting bed sores.”
It took Dr. González Sanders’ professional intervention to bring about minor changes that made large differences in the patient’s welfare. The included changes were participating in treatment meetings with the interdisciplinary care team, the patient and the caregiver spouse, advocating for a language interpreter for the patient and spouse, requesting that medicine and other health care information be provided in Spanish. Spanish language magazines were made available to supplement Spanish language television.