November is National Family Caregivers Month.
There are more than 11 million family caregivers in the U.S and nearly half of these caregivers provide help to someone with Alzheimer’s or another dementia. Here in New York state, there are more than 563,000 caregivers who provide 865 million hours of care valued at $16.08 billion.
Caregivers for Alzheimer’s and dementia face unique challenges.
Here are 5 reasons why Alzheimer’s caregiving is challenging:
- Caregiving for someone with memory loss is exceptionally demanding.
● Alzheimer’s caregivers are often managing multiple conditions, not only memory loss but:
○ Long-term physical conditions, including a gradual loss of mobility
○ Emotional issues
○ Behavioral and personality changes
- Caregiving tasks are often more intensive and burdensome
● Caregivers of people with dementia report providing 27 hours more care per month on average (92 hours versus 65 hours) than caregivers of people without dementia.
● Among all older adults with dementia, 77% receive assistance with at least one activity of daily living (ADL), such as bathing and dressing, in contrast to only 20% of older adults without dementia.
- Alzheimer’s caregivers often have to provide care over a longer period of time
● Average life expectancy following a diagnosis is four to eight years but can be as long as 20.
● During the course of the disease caregiving tasks escalate and become more intensive
- Alzheimer’s caregivers report greater stress and personal health problems
● 59% of Alzheimer’s caregivers report their emotional stress as high or very high. (Non-Alzheimer’s caregivers – 41%)
● 35% report declining health because of caregiving (Non-Alz caregivers – 19%)
● A recent national poll found 27% of caregivers for people with dementia delayed or did not do things they should for their own health.
- Impact on Employment
● 57% reported sometimes needing to go in late or leave early due to care responsibilities,
● 18% reduced their work hours
● 9% gave up working entirely.
“Caring for someone with Alzheimer’s is overwhelming for many caregivers here in New York,” said Amanda Drobnica, Senior Director of Programs for Alzheimer’s Association Rochester Finger Lakes Chapter. “However, there is support and resources available including local support groups, education programs and our 24/7 Helpline. No one should face this disease alone and the Alzheimer’s Association is here to help.”
The Alzheimer’s Association free Helpline is 800.272.3900 and allows people living with dementia, caregivers, families and the public to speak confidentially with master’s-level care consultants for decision-making support, crisis assistance and education on issues families face each day.
Providing help and support to caregivers can be easier than most people think. Even little acts can make a big difference. The Alzheimer’s Association Rochester Finger Lakes Chapter offers these suggestions:
● Learn: 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.
● Build a Team: Organize family and friends who want to help with caregiving. The Alzheimer’s Association offers links to several free, online care calendar resources that families can use to build their care team, share takes and coordinate helpers.
● Give Caregivers a Break: Make a standing appointment to give the caregiver a break. Spend time with the person living 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. Even one hour could make a big difference in providing the caregiver some relief.
● Check In: Many Alzheimer’s and dementia caregivers report feeling isolated or alone. So start the conversation – a phone call checking in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day and help them feel supported.
● Tackle the To-Do List: Ask for a list of errands that need to be run – 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 we often 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. Be specific in your 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.
● Help for the Holidays: Holiday celebrations are often joyous occasions, but they can be challenging and stressful for families facing Alzheimer’s. Help 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.
● Join the Fight: Honor a person living with the disease and their caregiver by joining the fight against Alzheimer’s. You can volunteer with your local Alzheimer’s Association chapter, participate in fundraising events such as Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study through the Alzheimer’s Association’s Trial Match.
To learn more about Alzheimer’s disease and other dementia and find local support services and resources, visit alz.org/RochesterNY.