As the primary caregiver for a person with Alzheimer's disease or dementia, you have a lot on your plate. Your loved one depends on you, and – if you're like many family caregivers – many others do too. It might feel like you simply can't take a break or that doing so would be more trouble than it's worth.
Other caregivers can't take care of your loved one the way you do, or your loved one gets so anxious or upset it doesn't feel like a break at all. I understand where you're coming from, but the truth is that taking routine, scheduled breaks from your caregiving responsibilities is not a luxury – it's a necessity that, as a dementia caregiver, you can't do without.
You may be able to struggle without breaks, but you'll find that your patience, health, and well-being will be affected. You can't provide your loved one the same level of care as you can when your needs are fulfilled.
Maybe it seems like you're handling your family member's dementia okay at the moment, so there's no big urgency to act. However, this is the perfect time to do so! It's much wiser to put respite before you think you need it. You'll be in a better position to do so, your loved one may be more receptive to it, and you can prevent many issues before they arise by taking a proactive approach.
It may seem overwhelming to figure out respite care on top of everything else you have right now, but help is available to walk you through the process. By taking this step now, you'll be better able to handle the daily demands while reducing countless unforeseen challenges in the future.
Arranging respite care for your loved one with dementia is important for your well-being as a caregiver and your loved one. They benefit as much as you do from good respite care, although last-minute respite care, hastily arranged in the throes of a crisis, will be very hard on them.
Read on to explore what good respite care looks like and learn how to set it up.
The word "respite" means a short period of rest or relief from a difficult undertaking, and gaining a period of rest and relief from the demands of caregiving.
If you're the primary caregiver for a person with dementia, you probably can't leave your care recipient alone while you enjoy an extended break. You'll need to arrange for someone to provide temporary care while you mentally and physically reset and recharge.
Respite care can be structured in many different ways. It can be provided for a few hours, a few days, or even a few weeks at a time. Various respite care options are available, including home care, nursing homes, and adult day care programs. It can also be provided by a caregiver who takes your loved one out into the community for therapeutic activities.
While sporadic breaks are better than nothing, respite care is most beneficial when respite time is scheduled routinely for both the person living with dementia and their primary caregiver.
Caregiving can be very demanding, and when your family member has dementia, the stress often builds up over a long period. Little by little, many primary caregivers don't notice as they grow increasingly exhausted. Those who do often believe they have no other option continually push themselves onward through sheer force of will.
Over time, exhaustion takes its toll on caregivers emotionally and physically. Caregivers begin to have difficulty meeting their own needs as they struggle to meet the needs of their care recipients. Caregivers sacrifice sleep, social interaction, leisure time, relaxation, and other vital activities to maintain their well-being. This can lead to caregiver burnout, a state of profound physical, emotional and mental exhaustion that can seriously impact their health. The consequences can be catastrophic, including:
Caregiver stress and burnout can lead to:
The antidote to caregiver burnout is self-care – meeting your own needs on an ongoing basis. Taking a break is essential to long-term sustainability when caregiving duties dominate daily life. It's not a luxury.
If your loved one needs constant care or supervision over an extended period, respite care is key to a successful family caregiving scenario.
When respite sessions are scheduled regularly, you can anticipate when your next break will occur and make plans to take care of your needs accordingly.
Regularly scheduled periods of respite allow you to:
When respite care is routinely scheduled, you share caregiving duties with another person. Having a partner or care team can help you feel less alone and provides a chance to receive invaluable insight, observations, assistance, or suggestions regarding your loved one's needs or challenges. Doors begin to open, and solutions you might not have considered come to light.
In some cases, your care team can tackle some of the activities of daily living from your to-do list, like bathing, meal preparation, or housekeeping. This can further free up your finite time and energy for other purposes. Good, routine respite care can significantly reduce the burden of your caregiving responsibilities.
Last but not least, spending time apart from your loved ones improves your ability to appreciate, be patient with, and be your best for them when you are together. You'll be able to derive more satisfaction from your caregiving experience.
The benefits of regularly scheduled respite care also extend to the person with the dementia diagnosis.
There are many different types of respite options available. Here are a few you should know that are available:
Adult day centers (also called adult day care or adult day programs) can be superb sources of respite care. Adult daycare schedules vary but usually meet a few hours a day, several days a week.
Adult daycare programs usually offer various activities designed specifically to support mental, emotional, and social skills in people with Alzheimer's or other forms of dementia. The staff is knowledgeable about working with dementia and can offer valuable insight into connecting and communicating well with your family member.
Our home care services can meet your family's specific needs. Professional caregivers can provide respite care services in your home or take your loved one out on errands or outings.
Home care aides can assist with personal care needs, like dressing, bathing, or grooming. They can also help around the house with light housekeeping, pet care, or meal preparation.
Many people in the early stages of dementia derive great satisfaction from being productive and helpful. They enjoy contributing to the household but may need some support.
By scheduling a caregiver for a few hours a day once or twice a week, you can preserve your valuable energy while providing your loved one an important opportunity to be engaged in meaningful activity.
Overnight respite care is sometimes available in long-term care facilities, such as nursing homes or memory care facilities. You can also arrange for someone to stay home with your loved one.
Moving a loved one with dementia into a care facility for a night or two will likely be stressful and disruptive for them. In some cases, there's no other option, but, if possible, it generally makes sense to keep a person with dementia in a familiar environment.
They'll feel more comfortable, less confused, and can function at a much higher level. Ask another family member, or hire a professional caregiver, to stay in the home while you take a night, a weekend, or an extended break for yourself.
If your loved one is up a lot during the night and disrupts your sleep, consider hiring routine overnight care to keep an eye on them. A caregiver can tend to your loved one's needs while you rest. They can also handle a few loads of laundry, sweep the floor, wipe down the bathroom, and tackle other quiet tasks from your to-do list while at it.
Volunteers, including friends or other family members, can often provide valuable respite care to your family at little to no cost.
While many volunteers may be limited in what they can do with your loved one in terms of providing care services, they can offer valuable companionship, supervision, and assistance with basic household tasks.
The cost for respite care depends on which respite care provider or option you choose. According to the Genworth Cost of Care Calculator, the 2021 national averages were:
Some programs offer sliding scale charges for those with limited income, so be sure to ask about options for financial assistance.
Other organizations offer financial assistance to those struggling to pay for respite care.
Unfortunately, Original Medicare doesn't pay for respite care services, but other insurance plans may.
If you need to find respite care for a family member with dementia, you have options.
The Alzheimer's Association Resource Finder can help you locate local respite providers, including adult day centers and other supportive services for people with Alzheimer's or dementia and their caregivers.
The Arch National Respite Network provides a National Respite Locator to help family caregivers find local respite care providers for their loved ones.
The Eldercare Locator is a resource center provided by the U.S. Administration on Aging to support older adults, their families, and caregivers. Enter your zip code to find local services and resources.
Your Local Area Agency on Aging is the go-to local organization for coordinating assistance and supportive services for older adults and family caregivers.
People with dementia often resist letting a stranger in their home or joining a respite program. The idea of trying something new can just be too frightening and overwhelming.
Your loved one may benefit from a transition period to acclimate to new people, places, or routines. Good planning can lead to successful transitions resulting in the least resistance and the highest chance for a smooth and successful respite experience. Skilled dementia care professional can help you come up with a plan.
Dementia care providers who can help develop a respite transition plan may include:
If you're taking care of a person with dementia at any time, it's incredibly important to schedule respite care regularly.
Opportunities for respite can make an enormous difference in your physical and emotional health and extend the length of time you can keep caregiving. Providing respite services to your loved ones can dramatically improve their quality of life and the quality of care they receive.
If you need assistance figuring out how to set up respite opportunities or convince your loved one to be open to them, talk to someone skilled in dementia care. It doesn't have to be a solo effort. Asking for help - or making a plan - may be necessary, but options are available.