For the family and friends of a person diagnosed with Alzheimer’s disease the struggle to not only take care of their loved one but also to practice self-care are tiring, seemingly never ending battles.
The effort strains the caregivers’ strength, patience and financial stability. Many people don’t know if they’re eligible for assistance or if assistance is even available.
Alzheimer’s of Central Alabama works to make sure such families never feel alone. For the past 25 years, ACA has provided resources for families who have made the decision to keep a loved one with Alzheimer’s at home.
“We provide them with services in education, advocacy and research,” said Miller Piggott, a cofounder and operator of ACA. The organization provides three major programs that cover the needs of their patients. “We have services that match the disease course,” Piggott said. “We have many programs that we provide to people but we have three that are our main priority.”
The first program Project Lifesaver works in concert with the Jefferson County Sheriff’s Department, providing Alzheimer’s patients with a tracking bracelet to make it possible to find them should they become lost. “We have the largest Project Lifesaver program in the state,” Piggott said.
The need: some 60 percent of patients will wander and those that do tend to do so repeatedly. “Here in Jefferson County we have lost three patients since the first of the year that unfortunately were not found in time,” Piggott said. “It’s a really dangerous behavior, so that’s why Project Lifesaver is such an important program we provide.”
In another service, ACA also provides scholarships that allow patients to attend adult daycare centers. The organization works with centers in Jefferson, Shelby and Tuscaloosa counties, Piggott explained. “It’s a very affordable type of respite care but there are still many families that can’t afford it,” he said. “And it really makes a big difference because it keeps the patient up and active and engaged. It helps them sleep better at night. It helps with behavioral problems. They eat better. Overall, patients that go to adult daycare really do well.” ACA provides funding for adult daycare for about 50 families a month, he noted.
ACA’s third program delivers hygienic supplies to families unable to afford the necessities. “We provide continent supplies in all of the 21 counties that we serve,” Piggott said. “We will have UPS deliver whatever you need to your door. It’s a really important program because we have a lot of families that they come to us and say they’re having trouble with their prescriptions. And if you’re having trouble with your prescriptions then odds are you can’t afford essentials like diapers or catheters either.”
A history of service
Piggott has been with ACA since it was founded in 1990. He began his work with Alzheimer’s through a support group that met at UAB where he had worked for 20 years. “Some of our members wanted to become more involved and to be their own advocates,” he said. The group that became ACA started off small, but he said, “We’ve been here ever since and we’ve done a world of good for people.”
On July 17, ACA is expected to hold a conference in partnership with Dawson Baptist Church to inform all caregivers and loved ones about what they can do to make taking on this responsibility as easy as possible. “This conference is intended to be a caregiver conference but there are continuing education credits available to nurses and social workers who want to attend also,” Piggott said.
The conference last year focused on research. “We have done a great deal of funding towards Alzheimer’s research. We do a lot of research grants, all locally,” Piggott said. “This year we are focusing on two different things: the present and the future.”
“Alzheimer’s in Alabama: Present and Future” will deal with how to care for the current generation of patients, he said. “We will go over all the basic information that every caregiver needs to know. One big problem families face is what we call ADL problems — which means Activities of Daily Living — and that includes getting your loved one/patient to take a bath or brush their teeth, to do the things we do easily every day. Often patients can be resistive to care so we have a nurse come and provide really practical tips.”
The afternoon session of the seminar will focus on the future. “We’ll go over how people who are at risk can prevent or postpone the risk of dementia,” Piggott said. “We know there’s a connection between heart health and mental health so we always advise people to stay on a healthy diet, to exercise, etc. So we have a few doctors and nutritionists coming to discuss the things that at risk people can do to help reduce their risk.”
Now in its second year, the conference is one of several services ACA offers in conjunction with Dawson. Another is a state grant-funded iPod distribution program in which patients are provides mp3 players programmed with their favorite music. “Studies have shown that if you program an iPod for a specific patient … that patient will be less agitated, they’ll be more alert and more willing to cooperate with care,” Piggott said. While the patient is listening to music, the caregiver can devote time to other necessary business like cooking dinner or folding laundry, he said.
Dawson and ACA also provide recreational activities for Alzheimer’s patients, including art therapy. “We’re trying to embrace the fact that this is a long term chronic disease,” Piggott said. “It lasts many years and you have to continue to embrace life for as long as you can. So we provide things like music and art classes because we find that those are great ways to build moments of joy for patients.”
In the fall Piggott said Dawson plans to start a choir program for Alzheimer’s patients: “The patients will meet once a week and practice and then after about a month or two they’ll have a little concert for their loved ones. We think it will be something the patients will really enjoy.”
ACA holds major fundraisers twice a year to support research and starting new programs. One is a walk inside the Riverchase Galleria, scheduled for November 7; the other a cocktail-party style auction “to get people interested in donating money,” Piggott said. “We want people to have a great time and to raise awareness and money at the same time.”
Giving care to a loved one at home can create both emotional and financial stress, and ACA aims to assist with both. “Not everyone can afford ’round the clock care or private care. We get that,” Piggott said. “A lot of the elderly care facilities we work with understand that. We get that most people want to keep their family members at home as long as possible. Most families opt for that. Some of these people can do that if they just had some support in making homecare more manageable. And that’s what we do.”
Alzheimer’s in Alabama: Present and Future will be July 17 at Dawson Baptist Church from 9 a.m. to 4 p.m. For more information on Alzheimer’s in Central Alabama call 205-871-7970 or visit their website, alzca.org.