1. Make sure the diagnosis is accurate
There are more than 120 other conditions that can cause the same symptoms as Alzheimer’s and other forms of dementia, according to Barbara Dzikowski. She’s the program director at Alzheimer’s and Dementia Services of Northern Indiana, a division of REAL Services.
Doctors familiar with dementia usually run patients through a protocol of tests to rule out the other causes. Make sure that your family member’s doctor has done their due diligence to rule out other potential causes.
2. Find a doctor you’re comfortable talking with
This could be a family doctor who has a lot of experience with Alzheimer’s and dementia, but often a specialist will be needed as the disease progresses over time. In this case of dementia, the type of specialist to seek out is a neurologist.
3. Learn as much as you can
Alzheimer’s and other forms of dementia are complicated diseases that impact both the person diagnosed and their whole family. Learning about the disease and what changes to expect can be a big help for everyone.
“If families learn a basic approach in the way they’re doing things, it can make a world of difference in cutting down on their stress and on their loved one’s stress,” Dzikowski said.
4. Contact organizations that can help
Organizations that specialize in Alzheimer’s care tend to have a long list of resources for Alzheimer’s and dementia patients, caregivers and family members. Locally, Alzheimer’s and Dementia Services of Northern Indiana offers a schedule of classes and seminars that can be very helpful.
Family members who don’t live in northern Indiana can reach out to their Area Agency on Aging.
5. Consider having a family conference
Alzheimer’s disease and dementia impact the whole family, so it’s important for everyone to get on the same page from the beginning, Dzikowski said. She also suggests having ongoing meetings whenever a major change — like a loved one not being able to drive anymore — happens.
“Everyone in the family can help a loved one, no matter how far away they live,” Dzikowski said. “Calling to check in on their loved one. Sometimes it’s financial help. Sometimes it’s being the internet searcher who has the time to do research on education and support and even physicians. Or coming home occasionally to help the caretaker at home.”
Alzheimer’s disease and other forms of dementia can progress for 8 to 10 years or more and is always a changing picture. Having the whole family involved and on the same page helps the flow go a lot smoother.
6. Plan a daily routine for your loved one
Alzheimer’s and dementia patients struggle with their most recent memories — the short-term memories — first. Establishing a routine for a loved one makes it easier for them to remember what happens on a daily basis which helps them function better.
Of course, routines will get disrupted by things like doctor’s appointments and family visits, but Dzikowski said that a bit of advanced planning can make those disruptions more successful.
“If morning is a hard time for a loved one, that’s a bad time to schedule doctor appointments,” she said. “Those things we can plan ahead for, we can help our loved ones navigate.”
7. Consider and monitor safety issues
This will need to something family members do often. Watch out for the ability to drive, run power tools and even smoke. Consider home layout issues like stairs, pools and fire hazards like stoves and appliances.
Family members should also watch out for times when their loved one can wander off and get lost, both while driving and walking. Re-assess these often so that you can talk with your family about how to handle these situations and issues before they become major problems.
8. Talk with an experienced elder law attorney
There aren’t many attorneys who specialize in elder law, but Dzikowski said it’s important to talk to one who is when your loved one has Alzheimer’s or dementia.
Most attorneys can handle end-of-life decisions or trusts, but elder law specialists are familiar with the challenges that come with Alzheimer’s and dementia, Dzikowski said. That means they can write up a power of attorney that will best help caregivers and handle the constantly-changing Medicaid laws.
9. Plan ahead for services
As the disease progresses, your loved one’s needs will almost definitely change. Plan ahead now to arrange (and pay!) for formal services like home-delivered meals, adult day services, home health care and volunteer opportunities.
Think about informal options too. Can neighbors help out, especially with services that might be more expensive? Maybe paying a lawn service will be too expensive, but perhaps a neighborhood kid will mow or rake for some extra cash every week.
“REAL Services is a wonderful clearing house for that,” Dzikowski said. “When you call, you’re connected with an options counselor who can walk you through an array of not just what they provide but their network of partners.”
10. Look for a network of resources
Is your loved one connected with any organizations like a church or volunteer group? There could be sources of help and information there. If your loved one is a veteran or a veteran’s spouse, make sure to contact the Veteran’s Administration. The VA offers a lot of great support for veterans, including Alzheimer’s and dementia services.
11. Find some support for yourself
Taking care of a loved one with Alzheimer’s or dementia — whether you’re a full-time caretaker or not — can be emotionally draining. It’s really important that you find some support for yourself so you can get some relief and comfort.
Connect with another family member to chat or a friend or clergy member. Look for support groups geared towards caretakers. Talking about your feelings and experiences will help you manage your emotions, which will in turn allow you to take better care of your loved one.
12. Look into the Project Lifesaver program at your sheriff’s office
If at any point you think your loved one might wander off or get lost, it might be a good idea to enroll your loved one in the Project Lifesaver program.
In Project Lifesaver, your loved one will receive a GPS-enabled device that can help track adults who may get lost or wander.
“It’s not just an ID bracelet. It’s an actual device that emits a signal than can be pinged and located,” Dzikowski said. Most sheriff’s departments, including St. Joseph and Elkhart counties, have this program.
13. Monitor your own stress, especially if you are the primary caregiver
You need to be happy and healthy too, not just for your loved one but also for yourself. Make sure you’re taking care of yourself physically and emotionally so that you can be your best self.
Give yourself regular breaks from care-taking and arrange for ongoing relief. Talk with other people who are in similar situations. Plan ahead for your loved one’s changing needs as much as possible, but also remember that you don’t have to do everything all by yourself.
“As we say many times, Alzheimer’s is not a sprint. It’s a marathon,” Dzikowski said. “It starts out really manageable. A lot of people get lulled into the small changes that a caregiver needs to do. As changes occur, if the caretaker is not getting support, it’s a tough thing to do without reaching out and getting support. The more caretakers know and learn, the better people fare.”
Getting that help will also allow caretakers to slow down during the good moments and bond with their loved one.
“Caregiving is not always a bad road,” Dzikowski said. “It can be a real gift for both patient and caretaker.”