Recognizing family caregivers: Alzheimer’s Association chapter provides support to those who provide support
By Eileen Persike
RHINELANDER – Alzheimer’s disease is the most common type of dementia among older Americans. The most current statistics show there are some 120,000 people in Wisconsin with the disease. A fact that may be less known is that nearly 200,000 caregivers are providing daily unpaid care for their loved ones suffering from dementia.
“I don’t think a lot of people really understand when there is a diagnosis of Alzheimer’s or another type of dementia that most of that care – about 70% – takes place at home in their community,” said Julie St. Pierre, community outreach specialist with the Alzheimer’s Association Wisconsin Chapter. “So there are networks of family and friends and neighbors who are the people providing the 24/7 care that is required to keep that person living at home safe.”
November is Alzheimer’s Awareness Month, and it is also National Family Caregivers Month, which St. Pierre said gives the Alzheimer’s Association an opportunity to recognize those who provide the intensive care required for their loved ones. Dementia caregivers report providing 27 hours more care per month on average than caregivers of people without dementia. A recent study found that people with dementia required 151 hours of care giving per month at the outset, increasing to 283 hours per month eight years later.
St. Pierre said it’s important that in addition to the Alzheimer’s Association being a national non-profit healthcare organization, it also has local chapters providing ground level care and support for everyone affected by dementia.
“With the local chapters, callers can get answers to their questions in real time,” St. Pierre said. “What’s available in northern Wisconsin? Where do I turn if I need help to come into the home? Where do I find a doctor who is comfortable treating the disease? The Alzheimer’s Association recognizes the importance of having local connections.”
One of the most common concerns from people in the Northwoods involves noticing changes in a parent or neighbor, and not knowing whether that is attributable to dementia or a normal part of aging, St. Pierre said.
“There are things that can mimic Alzheimer’s or dementia that could be reversible and treatable,” she said. “So the first step is making sure people are noticing those changes, to be talking to their healthcare provider about what could potentially be causing those problems.”
The biggest step that caregivers can take, St. Pierre said, is to proactively plan for the future, even though things are currently manageable, but as the disease progresses, changes may arise.
“I’m always encouraging families to contact agencies and have conversations and find out what services they provide and what services they might need and begin that process before you might actually need it,” St. Pierre stated. “The goal is to prevent catastrophic situations that might result in someone having to go to a nursing home prematurely or end up in a hospital situation.”
A caregivers support group meets the third Thursday of the month at 1 p.m. at the Aging and Disability Resource Center of Oneida County, 100 Keenan St., Rhinelander. It provides an opportunity for caregivers to connect with one another.
“There is a lot of laughter, a lot of tears, a lot of sharing over things that are going well for them, things they are struggling with,” St. Pierre said. “No two situations are exactly the same, but they aren’t really alone. There are people who can understand what they are going through.”
St, Pierre can be reached at 715-352-4091. A 24/7 helpline is available at 800-272-3900 and more information on dementia can be found at www.alz.org-wi.
Eight ways to support an Alzheimer’s caregiver
Learn about the disease: Educate yourself about Alzheimer’s disease – its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help. The Alzheimer’s Association has a vast amount of resources and information available at alz.org.
Create a care team calendar: The Alzheimer’s Association Care Team Calendar is a free, personalized online tool to organize family and friends who want to help with caregiving. This service makes it easy to share activities and information within the person’s care team. Helpers can sign up for specific tasks, such as preparing meals, providing rides or running errands. Users can post items for which assistance is needed. Search for the calendar at alz.org.
Offer caregivers a reprieve: Make a standing appointment to give the caregiver a break. Spend time with the person with dementia and allow the caregiver a chance to run errands, go to their own doctor’s appointment, participate in a support group or engage in an activity that helps them recharge.
Check in: Almost two out of every three caregivers said that feeling isolated or alone was a significant challenge in providing care for someone with Alzheimer’s or another form of dementia. What’s more, half of all caregivers felt like they couldn’t talk to anyone in social settings or work about what they were going through. So start the conversation – a phone call to check in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day.
Tackle the to-do list: Ask for a list of errands, such as picking up groceries or prescriptions. Offer to do yard work or other household chores. It can be hard for a caregiver to find time to complete these simple tasks that non-caregivers take for granted.
Be specific and be flexible: Open-ended offers of support (“call me if you need anything” or “let me know if I can help”) may be well intended, but are often dismissed. Make a specific offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help.
Make holidays easier: The upcoming holiday season can pose additional challenges for families facing Alzheimer’s. Support caregivers around the holidays by offering to help with cooking, cleaning or gift shopping. If a caregiver has traditionally hosted family celebrations, offer your home instead.
Support the Alzheimer’s cause: Honor a person living with the disease and their caregiver by joining the fight against Alzheimer’s; volunteer at the local chapter, participate in fundraising events or advocate for more research funding.