Dr Lynn Woods, Professor in the Department of Doctoral Programs, School of Nursing, Azusa Pacific University, discusses the challenges of dementia and caregiving within the Latino community
Twenty-one percent of Latinos are caregivers to someone with dementia., generally a family member. They spend more time and experience increased burdens compare to their White or Asian-American counterparts. The stress that caregivers experience can, and frequently does, lead to negative emotional (depression) and physical (cardiovascular, hypertension) events. The increased stress associated with caring for someone with behavioural symptoms of dementia (BSD) elevates this risk further.
The number of Latinos aged 65 or older will increase more than sevenfold from 3 million in 2012 to 21.5 million in 2060. The number of Latinos living with AD is projected to increase from 379,000 in 2012 to 3.5 million by 2060, a growth of 832% with an economic impact of $2.35 trillion (in 2012 dollars) on the Latino community.
Caregiving is challenging in and of itself. However, these challenges are increased in the Latinx community. Currently, an estimated 1.8 million Latino family caregivers are caring for someone with AD and other dementias. Cultural values, discussed in a previous publication, strongly influence the desire, obligation, and experience of caregiving. Affiliation, obligation and cooperation are emphasized in the Latinx culture. Experiences among Latino caregivers are not homogeneous.
While many experience barriers such as lack of understanding of dementia, mistrust in services, perception of inflexibility in services, there are those who have a different experience. Good communication with the care recipient and having an “expert”, frequently a professional who understands cultural values, as a point of contact, contributes to a more positive experience. Several issues influence the caregiving experience including economic issues and the lack of preparation for the caregiving role.
Economic issues
The economic challenges affecting many Latino older adults and their families create a difficult environment for addressing AD. Latinx and Latino older adults largely live month-to-month on low fixed incomes, making them particularly vulnerable to long-term, economically destabilizing chronic diseases such as AD which affect the whole family. Latino older adults are also more likely to experience poverty than other U.S. older adults. According to a study by the RAND Corporation, families can expect to spend between $41,000 and $56,000 annually in dementia-related costs. With the median household income totalling $38,000 for Mexican families and $36,000 for Puerto Rican families—the two largest Latino, this does not bode well for low-income Latino families experiencing financial hardship. Additionally, several older Latinos have little retirement saving in large part due to a number of part-time jobs or jobs that do not pay benefits in the U. S. Many Latino older adults struggle to meet their daily needs. Approximately 30% experience food insecurity. AD represents the financial “perfect storm” for Latino families already facing financial uncertainty.
One caregiver when asked stated that:
“We all basically went broke! I asked each family member to contribute some money monthly. I even asked her grandchildren which some willingly donated even to the smallest amount of $10.00 per month. Those who could not donate money, donated groceries, ran errands, and provided respite.”
The many challenges of caring for someone with AD are well known, including high levels of caregiver emotional distress, bouts of serious depression, and a decline in physical health and financial impairment driven by the costs of care and lost wages.
Latino family caregivers tend to be in more intensive caregiving situations with 63% in high burden situations compared to 51% of non- Latino caregivers. Women are at the forefront of the AD crisis in the Latino community with a growing number of men in the caregiver role. The typical Latino family caregiver is a 43-year-old female caring for an adult aged 62 or older, often a female. Informal caregivers provide the majority of care for those with AD; many studies have found these individuals to be burdened, anxious, and in need of social support. Latino caregivers are often faced with multi-generation caregiving situations; more than half of Latino caregivers have a child under 18 living at home, juggling approximately 30 hours a week of caring for the individual.
One daughter caring for her mother stated:
“Caring for a loved one with dementia or Alzheimer’s disease changes your life forever… your priorities are now determined by what is needed by your loved one; your needs and wants are now secondary.”
Given cultural values, several Latino caregivers are reluctant to ask for assistance or avail themselves of resources. However, family members and friends can help by being proactive. Suggestions include setting up a schedule for things like grocery shopping, laundry and other specific needs that you notice. Visiting is wonderful, however, specific assistance can make the difference between feeling overburdened, ready to quit, not knowing how to go on and the ability to manage. This help can decrease the sense of being alone in the process, provide support and decrease negative experiences. “Experts” can be proactive and engage in preventative efforts, communication and problem solving, with families so that they can begin to address issues such as grieving and the experience of caregiving.
Compared with other groups, Latinos rely on family support, thus underutilizing formal AD caregiving options, which may be financially prohibitive and inaccessible. With the skyrocketing Latino older adult population, it is essential that policymakers and health systems develop and deploy culturally tailored caregiving training, resources, and programming for Latino families living with AD. Moreover, the development of culturally tailored engagement efforts and educational resources to promote AD health literacy, early detection, and caregiver training among individuals, families, and community stakeholders is essential.
A shortage of Latino and minority medical professionals in the U.S. is another barrier to meeting the needs of the Latino older adult population. In 2013, approximately 4.5% of all practising physicians were Latinos yet Latinos represent 17% of the U.S. population. The lack of diverse clinicians and specialists, who understand cultural values and focus on Latino older adults represents a barrier to early and accurate diagnosis in addition to establishing ongoing support.
One caregiver stated:
“We’d been sitting in a waiting room in the Bronx for an hour, in a room filled with people who were struggling, who barely spoke English, who needed help, only to have a smug doctor tell me to Google my mother’s serious condition and devise a plan for her. He even wrote out a few URLs to get me started.”
Hopefully, there will be fewer and fewer of these experiences.
It is critical to improving access to inexpensive, culturally sensitive AD caregiving resources and training for informal caregivers in multiple languages. These efforts should include national, regional, and state-based coordination.
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