2013-06-11 08:10:00

Parkinson’s Care Decisions Challenge Latino Families

Part 2. Read Part 1 here.

DENVER, Colo.--One of the biggest challenges families are facing with an aging relative is determining which kind of long-term care is appropriate and realistic for their individual situation. The topic of eldercare can be overwhelmingly complex and difficult for families to navigate, particularly for those ill seniors who are poverty stricken, or members of ethnic minorities.

Latinos tend not to reach out as often as other groups for residential senior care, such as assisted living or home care, observed Cheryl Siefert, executive director of Parkinson Association of the Rockies in a recent presentation.

Misdiagnosis Leads
To Wrong Care

Although Latinos face twice the rate of Parkinson’s disease prevalent among other ethnic groups, patients and health care professionals need to be aware of frequent misdiagnosis.

Other diseases present with symptoms are similar to Parkinson’s, such as Multiple Dystrophy Atrophy. And the wrong diagnosis leads doctors to prescribe the wrong medications, tests and rehabilitation.

Colorado resident María García is the caregiver for her mother, Olga, who was diagnosed with Parkinson’s over three years ago. In early 2012, Olga began displaying advanced symptoms of the diseases, which is not typical in early stages of Parkinson’s. Within months she was physically incapable of caring for herself.

Parkinson’s was a logical diagnosis because Olga had spent years as a farm worker and working in manufacturing warehouses, where she was regularly exposed to pesticides and dangerous metals, such as lead, which are linked to the disease.

Doctors at their neighborhood clinic and her neurologist’s office insisted that Olga’s reaction was likely due to the strength of the Parkinson’s medications and they needed to be patient while doctors adjusted the levels of prescriptions.

After months of “trial and error,” María sought a second opinion. Olga was then diagnosed with a similar condition, multiple dystrophy atrophy. Doctors gave Olga new medications, and her quality of life has improved significantly.

The keys to better care, said María, are doing your own research and learning what questions to ask the doctor: “It can be frustrating and exhausting, but you have to be persistent to make sure you are getting the best care.”

She added, “If you don’t feel comfortable enough with the language and the discussion of medical terms, it’s important that you request to have a translator present at your doctor visits. I have spoken Spanish my entire life, but I don’t know medical terms in Spanish and I didn’t want important information getting lost in the translation. It’s unfortunate, but typically you have to be your own advocate, or advocate on behalf of your loved one.”

--Cristina Frésquez

This cultural barrier to care is unfortunate, she said, but when they do seek professional help, Latinos and other ethnic families are more likely to choose home care as a first option for a loved one.

Non-Medical Care

“When exploring long-term care for Parkinson’s patients it’s good to know that they need non-medical home health care because Parkinson’s deals primarily with cognition and mobility issues. So, people really need more help with things like bathing, dressing and transportation,” Siefert said.

She added, “Exercise, exercise, exercise! I can’t stress that enough! People don’t often think about it, especially if it’s not in their daily routine, but it really does make a world of difference for people with Parkinson’s.”

Also, Siefert said, Hispanic family caregivers family caregivers should consider home modification to make sure that the home is safe by removing physical and dangerous obstacles, such as loose rugs, installing bathroom grab bars and so on.

In addition, she emphasized that families need to understand the complications and limitations that come with Parkinson’s disease, an incurable ailment marked by neurological degeneration over several years.

Siefert advised families they need to consider all options available. They should base a decision on whether to opt for continued family caregiving, hired in-home care, an assisted living facility or nursing home on several factors. Primary among these are physicians’ recommendations, the intensity of needed care, their financial situation, availability of caregivers and the stage of the Parkinson’s.

If family members decide to be caregivers, they should know ahead of time what challenges they may be facing in caring for someone with Parkinson’s.

The severity and frequency of symptoms can vary from day-to-day and from morning to night. For instance, in the morning a person with Parkinson’s can be physically capable of tasks, such as walking and bathing. But by the evening, fatigue often set in—called “sundowning”—causing the person to experience problems simply moving or speaking. In some but not all Parkinson’s cases, a patient may develop dementia.

Families Now Doing High-Tech Care

Symptoms can also fluctuate widely depending on the medications being used and the combination of other health issues present, such as diabetes.

Although family caregiving once required relatively simple loving comfort and attention for an elder, caregivers today discover they are called on to provide increasingly high-tech care, said Susan Reinhard, who directs the AARP Public Policy Institute in Washington, D.C.

“Medical procedures and medicine administration that used to be done by a certified nurse is now being done by a family caregiver - doing things like injections, wound care and monitoring special diets,” explained Reinhard.

Reinhard, lead author of the 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” said the research revealed that almost half of family caregivers perform complicated medical or nursing tasks, and two-thirds of family caregivers surveyed for the study never sought help from an in-home nurse.

Additionally, Reinhard said, a large proportion of family caregivers receive little or no instruction on how to properly provide medical care for their loved one.

According to AARP, in 2009, there were an estimated 42.1 million family caregivers in the United States, which reveals a great need for caregiver services.

For some people with Parkinson’s who are in early to middle stages of the disease, assisted living may be a viable option, allowing more independence and better access to necessary medical personnel. The National Parkinson’s Foundation (NPF) also has a checklist on its website of things to consider when searching for an assisted living facility. Items range from reviewing the layout of the building and availability of medical staff to food service and monthly costs of living.

Nursing home placement, although it’s the last resort, is sometimes the most necessary decision.

According to the foundation, “You need to ask questions like, ‘How many Parkinson’s patients are there?’ And, ‘How long have you been treating Parkinson’s?’ It’s so important with Parkinson’s patients that their medications are taken on a specific time regimen because with Parkinson’s medications there are no ‘windows’ for these medications to be taken.”

Often in nursing homes, nurses administer medications to patients within a period of certain hours on a shift. But that schedule doesn’t work with Parkinson’s patients, who cannot wait.

Unfortunately, paying for long-term care is often the main determinant in deciding which route many take. Most organizations provide services to help navigate through the confusing maze that is Medicare and Medicaid. Often seniors or their families must pool various financial resources, such as Medicaid for low-income patients, disability insurance, retirement savings and limited private long-term care insurance to cover the costs.

Helpful Resources

The National Alliance for Hispanic Health
Su Familia: The National Hispanic Family Health Helpline

1-866-SU-FAMILIA (1-866-783-2645)
SuFamilia@hispanichealth.org or visit www.hispanichealth.org

National Parkinson Foundation Helpline: (Eng & Sp) 1-800-473-4636 1-800-327-4545 contact@parkinson.org or visit www.parkinson.org

American Parkinson Disease Association

Parkinson Disease Foundation
1(800) 457-6676

Eldercare Locator service
Helpline: (Eng & Sp) 800-677-1116

Cristina Frésquez wrote this article for The Weekly Issue/El Semanario through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.