Tips for caregivers
-- Speak to your loved one in a calm, pleasant and respectful manner.
-- Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
-- Before speaking, make sure you have his/her attention. Make eye contact, address by name and use non-verbal cues and touch to help keep him/her focused.
-- Speak slowly and in a reassuring tone.
-- Ask one question at a time with yes or no answers.
-- Refrain from asking open-ended questions or giving too many choices.
-- Break down activities into a series of steps.
-- When a loved one becomes upset, try changing the subject or the environment.
-- Respond with affection and reassurance.
-- Remember the good old days.
-- Maintain your sense of humor.
Source: Family Caregiver Alliance
Alzheimer’s is a brain disorder named for German physician Alois Alzheimer, who introduced the world to the disease at a scientific meeting in 1906, after working on the case of 51-year-old Frau Auguste D. for five years.
As a patient digresses into the disease, Alzheimer’s destroys brain cells, resulting in significant memory loss, thinking problems and often severe behavioral issues. The disease becomes worse, and over time, is fatal.
According to the Alzheimer’s Association, Alzheimer’s is the seventh-leading cause of death in the United States.
Today, Alzheimer’s disease accounts for 50 percent to 80 percent of dementia cases.
Although there is no cure for Alzheimer’s disease, treatment does exist in the form of the right services and support.
Treatment can make a world of difference for those living with Alzheimer’s. Researchers are working on better ways to treat the disease, delay its onset and prevent it entirely.
— Kelly Merritt
It’s a diagnosis every family dreads for a loved one — Alzheimer’s disease.
The disease seems among the cruelest of diagnoses, since a major component includes dementia, otherwise known as memory loss.
Until the day when Alzheimer’s can be cured, caregivers and families of Alzheimer’s sufferers face a challenging battle to care for the patient and oversee treatment of the difficult disease.
“Caregivers need to understand that this disease will have an enormous impact on the person who has been diagnosed and their ability to function,” said Gail Schultz, director of community relations at Juniper Village at Naples Wellspring Memory Care. “This is a disease that progresses over time.”
The most important thing caregivers need to know is how to be patient, understanding and to help the person preserve their dignity, Schultz said, adding that this means maintaining their independence for as long as possible.
In connecting with an Alzheimer’s patient, validation is essential. The caregiver must remain in the world of the Alzheimer’s patient, and refrain from bringing them into the world of the caregiver.
This can be a tall order for novice caregivers in dealing with an illness that requires significant repetition, constant oversight and special skills that require training.
Simple tasks such as helping the Alzheimer’s sufferer select a white or blue shirt, or whether to take a walk, can become exhaustive efforts.
The Family Caregiver Alliance reports that people with dementia can feel confused, unsure and anxious. They may recall things that never really occurred.
Response with verbal and physical expressions of comfort, support and reassurance are essential. And when all else fails, sometimes holding hands, touching, hugging and praise will get the person to respond.
So the first step a family member should take after a diagnosis is education. That should include adhering to tips on coping with the changes that the loved one will experience.
“Although the disease presents differently in each person, there are some commonalities,” said Erin Sakmar, executive director of Juniper Village. “Education is vital at this juncture.”
Sakmar suggests families participate in a monthly support group like the one offered at Juniper Village that works with families in the early stages of the disease process.
In fact, the sooner families get involved with organizations such as The Alzheimer’s Association or The Alzheimer’s Support Network, the sooner they will have access to the most current treatment options, advances in Alzheimer’s disease research and local support options such as adult day-care and respite care.
Juniper Village also provides short-term respite stays to assist families during those initial stages, which keeps more options open to the family for treatment as the disease progresses.
There are misconceptions in caring for someone with Alzheimer’s.
Though commonalties exist among patients, the approach for treating each individual is different.
This dynamic can add to caregiver stress, since there is no one game plan that works equally for all patients.
“The plan to address physical, cognitive and spiritual needs for those suffering from this disease needs to be individualized,” Sakmar said.
“Care and service cannot be provided in a cookie-cutter fashion to be successful and while support groups are very helpful, however what works with one individual may not have a positive result with another.”
Experts say the breaking point in providing in-home care vs. going to a special care center often revolves around the caregiver’s stress.
“It’s most important for caregivers to have peace of mind,” Sakmar said. “A good night’s sleep is critical for their own health.”
Because it can be difficult to care for a family member with Alzheimer’s on an outpatient basis, after seeking professional medical support, many families opt for permanently moving a loved one into a place such as Juniper Village.
Patients should receive a complete medical work-up from a physician that specializes in memory impairment to aide caregivers in making the difficult decision to surrender a loved one with Alzheimer’s to an assisted care facility.
And in the age of an unstable economy and insurance battles, the cost of providing around-the-clock care for an Alzheimer’s patient can place significant financial hardship on families.
In general terms, the cost associated with an assisted living community are far less than the going rate of providing 24-hour care in the home.
“There are many factors to consider when determining whether or not it’s time to make a move out of the home and into an assisted living community,” Schultz said. “First, Alzheimer’s communities provide appropriate stimulation and socialization to residents with memory impairment so a resident can flourish mentally, physically and socially.”
Despite the difficulties in caring for patients who suffer from Alzheimer’s, Schultz and Sakmar agree that it’s the whole person wellness that should be the focus of care.
Another way to do that is through their Best Friends Program, whereby each associate is assigned a resident, or “best friend” to spend time with.
“Family is very important to us at Juniper and it is our privilege to serve these seniors and their families,” Sakmar said. “Our mission is to nurture the spirit of each individual we touch.”
Because treatments for Alzheimer’s continue to evolve every day, so must the caregivers who administer those treatments. Juniper Village specializes in providing the evolving care and services.
The organization’s College of Lifelong Learning is a continuing education service that caregivers say helps them administer better care.
In addition to providing training classes for staff caregivers, Juniper Village also offers quarterly continuing education programs for local professionals through a partnership with Sunshine Pharmacy and the Mental Health Association of Southwest Florida.
Topics include behavioral issues and dementia, ethics and boundaries, and caregiver stress.
“Juniper’s unique approach to caregiving has made my job easier and more rewarding,” said Mervis Edwards, an Alzheimer’s resident caregiver for the past seven years.
Contact Kelly Merritt at Kelly@Kelly-Merritt.com