Treat Your Caregiving Like A New Job
Some caretakers find that caring for a loved one with dementia is like a full-time job. A lot of time, attention and life changes can be needed to ensure the loved ones safety.
As with any job, plan by finding opportunities for short breaks. Talk with family members to see if they might be able to care for your loved one for the night. If that doesnt work, try researching other methods to avoid burnout.
Care Interventions For People Living With Dementia And Their Caregivers
The aging of the U.S. population and the concurrent rise in the number of adults living with dementia underscore the urgent need for a systematic review of the available evidence for care interventions for PLWD and their formal and informal caregivers. The National Institute on Aging commissioned such a review from the Evidence-based Practice Center Program at the Agency for Healthcare Research and Quality. Dementia affects about 5 million U.S. adults 65 years and older , and that number may grow to almost 14 million by 2060. To read full article visit: the Department of Health and Human services Agency for Healthcare Research and Quality.
Alzheimers Disease: A Devastating Diagnosis
Few diagnoses can devastate a family like Alzheimers disease. Its estimated that more than 5.5 million Americans suffer from this debilitating condition, which ranks as the sixth leading cause of death nationwide.
Alzheimers disease gradually robs our loved ones of their memory and thinking skills until they are unable to perform even the most routine everyday tasks. Initially, you may notice only mild symptoms that have a minimal impact on daily life:
- Short-term and long-term memory loss
- Difficulty solving simple problems
- Struggles with routine, day-to-day activities
- Forgets words or begins mixing up words
- Loses items or becomes lost more frequently
- Becomes confused about current time or place
- Confuses the names and identities of people
- Acts more irrationally, irritable, or depressed than usual
But over time, these symptoms will grow more severe. Once the disease reaches its final stages, a person with Alzheimers may lose all short-term and long-term memory, the ability to speak and to understand speech, and the ability to perform even the most basic personal tasks, such as how to use the bathroom or eat on their own.
Eventually, every Alzheimers disease patient will need supportive care to ensure their safety and well-being.
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Planning For The Future: Tips For Caregivers
Making health care decisions for someone who is no longer able to do so can be overwhelming. Thats why it is important to plan health care directives in advance. To help plan for the future, you can:
- Start discussions early with your loved one so they can be involved in the decision-making process.
- Get permission in advance to talk to the doctor or lawyer of the person youre caring for, as needed. There may be questions about care, a bill, or a health insurance claim. Without consent, you may not be able to get needed information.
- Consider legal and financial matters, options for in-home care, long-term care, and funeral and burial arrangements.
Learning about your loved ones disease will help you know what to expect as the dementia progresses and what you can do.
Impact On Family Caregiver’s Health
Not surprisingly, the health of an Alzheimers caregiver is negatively affected by the declining health of the Alzheimers patient. During an 18 month study of Alzheimers caregivers, emergency room visits and hospital based services among female caregivers were twice that of the non-Alzheimers caregiver. The cost of the care during that time was $4,766 on average more per year than the health care cost of a non-Alzheimers caregiver.7
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Caregiving For People With Alzheimers Disease
Recent data from the CDCs Behavioral Risk Factor Surveillance System showed that those caring for a person with Alzheimers disease or related dementias have been caregivers considerably longer than caregivers of those with other health conditions. Depending on their health status, persons with Alzheimers disease or related dementias can live for a very long timeup to 20 years following the diagnosis.
Caring for people with Alzheimers can be challenging.
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Care Options For Seniors With Alzheimers Disease
Alzheimers tends to progress in three general stages, including mild, moderate, and severe. Those in the mild stage of Alzheimers may be able to function independently and continue to participate in social and recreational activities. During the moderate stage, which is the longest stage and can last for years, the individual may experience changes in their appetite and sleep patterns, be unable to remember information about themselves, and have an increased tendency to wander and become lost.
During the final stage, the individual loses their ability to respond to their environment, carry on a conversation and control their movement. At this stage, it is extremely challenging for family caregivers to provide care for their loved one without professional assistance. While youve undoubtedly poured yourself into your role as caregiver and have spent countless hours ensuring that your loved one is safe and comfortable, at some point, theyll need more care than you can reasonably provide. When this time comes, you have two primary options.
What Do Caregivers Need To Know
Here are some suggestions for caregivers of persons with Alzheimers disease or related dementia. These tips may help you cope with some of the unique challenges.
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Dementia Care: Keeping Loved Ones Safe And Happy At Home
Of the 5.8 million people in the United States who have Alzheimers disease and other types of dementia, many remain at home, an option thats been shown to help them stay healthier and happier and live longer.
But home care isnt always easier caregiving often falls on the shoulders of family members and friends. And these well-meaning loved ones can burn out without the proper support, experts warn.
The care of dementia is actually the care of two people: the person with the illness and the person taking care of them, says Johns Hopkins geriatric psychiatrist Deirdre Johnston, M.D. But when Johnston and a team of researchers studied more than 250 Baltimore residents with dementia and their caregivers, they found a staggering 97% to 99% of both groups had unmet needs.
Keeping your loved one safe and happy at home with dementia home care can seem overwhelming. But dont lose heart: Plenty of help is out there, for your loved one and for you. Here are some tips that may help:
The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
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We Understand The Problem What Now
As a society, weve studied this problem. We understand it. The rate of Alzheimers is growing. It cant be prevented, treated, or cured. This fatal disease progresses over many years. The well-being of caregivers, especially female Alzheimers caregivers, is often permanently affected. While we await viable treatments, what options do we have, as individuals and families, as communities and as a society? Can employers do anything to provide some solutions for its caregiving employees? What should caregivers do?
No matter who we are in the life of a caregiverspouse, adult child, neighbor, friend, fellow church member, employerwe need to give the caregiver support. Ask them what they need. Time away? Cooked meals? Someone to shop? Someone to take the car in for a tune up? Respite? The list is endless. If you are reading this article, chances are you are an Alzheimers caregiver, or you know an Alzheimers caregiver. Reach out to give or get support.
How about employers? More and more, we do see employers adding elder care benefits for their employees. Still, much more could be done to support their caregiving employees. For employers, there can be big advantages for a relatively small cost. There would be savings in lost productivity. Having a benefit sends a supportive message to employees. Options for employers include:
Take Care Of Yourself
Family members who care for people with dementia have more anxiety and depression than other caregivers. Here are a few self-care tips:
- Ask for help. Reach out to family, friends, or an adult day-care. Even a few hours of help a week can lower your stress.
- Join a support group. Whether online or in person, you can share your experience and find resources.
- Talk to a counselor. They can help you understand your feelings and manage stress.
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New Support Group Available For Caregivers Of People With Alzheimers Or Dementia
Fifty-nine percent of family caregivers of people with Alzheimers or other dementias rated the emotional stress of caregiving as high or very high
LAMPASAS, TX In partnership with the Alzheimers Association Capital of Texas Chapter and the Area Agency on Aging of Central Texas, Texas A& M AgriLife Extension is hosting a Caregiver Support Group on the third Friday of each month at 10 a.m. The new support group begins May 20, 2022.
Alzheimers Association support groups, conducted by trained facilitators, are a safe place for people living with dementia and their care partners to:
- Develop a support system.
- Exchange practical information on challenges and possible solutions.
- Talk through issues and ways of coping.
For those who have an Alzheimers or other dementia diagnosis, or have a family member living with the disease, life can sometimes feel overwhelming and isolating. Caring for someone with Alzheimers disease or another form of dementia can present exhausting challenges that can take a significant toll on caregivers physical and mental health. The Alzheimers Association 2022 Alzheimers Disease Facts and Figures report notes that caregivers can experience increased emotional stress and depression new or exacerbated health problems and depleted income and finances as the person with dementias symptoms worsen. Greater satisfaction from dementia caregiving was associated with more emotional support from family members and friends.
Resources For Caregivers Of People With Alzheimers Disease And Related Dementias
When a family member or loved one has Alzheimers disease or a related dementia, you may find yourself left with more questions than answers. These diseases change the way a person thinks and acts, and can be very challenging, especially for those in a caretaking role. Learning more about these diseases, what to expect, and what you can do can make a difference in a caregivers health and well-being and the well-being of the person youre caring for.
The federal government offers reliable resources on Alzheimers disease and related dementias and can connect you to important information about care and support. You can use the pages on this website and resources below to find more information from government sources. The information provided on these websites has been reviewed by experts in their fields. Health care providers, case managers, social workers, and nonprofit organizations may also be helpful.
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You Dont Have To Go Through It Alone
There are more than 1 million family members and friends caring for the nearly 400,000 New Yorkers living with Alzheimers disease and other dementias. Eddy Alzheimer’s Services is primarily funded through the Alzheimers Caregiver Support Initiative, a New York state grant funded effort which seeks to alleviate the financial and emotional burden placed on these caregivers.
Together Eddy Alzheimers Services and its grant partner the Alzheimers Association of Northeastern New York, provide a wide range of free supportive services for caregivers across a 11-county region. All services are aimed at helping support the caregiver in their caregiving journey.
Adult Day Care Services
Adult day care services provide a safe environment, activities, and staff who pay attention to the needs of the person with Alzheimer’s in an adult day care facility. They also provide transportation. The facility may pick up the person with Alzheimer’s, take him or her to day care, and then return the person home. Adult day care services provide a much-needed break for you.
What to know about costs:
- Adult day care services charge by the hour.
- Most insurance plans don’t cover these costs. You must pay all costs not covered by insurance.
How to find them:
- Call the National Adult Day Services Association at 1-877-745-1440. You can contact the Eldercare Locator at 1-800-677-1116.
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Alzheimers Disease And Women Caregivers: The Impact And The Burden
Kathleen Allen, LCSW, C-ASWCM
Senior Care Management Services, LLC
Over the last ten years, many studies have documented the impact Alzheimers disease is having on caregivers, caregiving employees, their employers, and on the economy. The numbers are staggering and growing.
In America, at this time, more than five million people have Alzheimers disease. By 2025, that number is expected to grow to over seven million, and triple by 2050.1 Women are approximately two-thirds of those who suffer from Alzheimer’s. People age 65 and older survive an average of 4-8 years after a diagnosis of Alzheimers disease. Some live as long as 20 years.
And those caring for them? In 2012, 15 million Americans provided 17.5 billion hours of unpaid caregiving. That care is valued at $216 billion.2 Approximately 60% of Alzheimers caregivers are women,3 the focus of this article.
Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
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Alzheimers Foundation Of America Caregiving Resources
The Alzheimers Foundation of America provides numerous helpful resources for Alzheimers caregivers, including a free helpline, dozens of fact sheets, free community classes, webinars, and more. The AFA also offers a National Memory Screening Program, which provides free, confidential memory screenings throughout the United States on an ongoing basis. The program has screened more than 5 million people across the country to date.
Caregiving In The Early Stages Of Alzheimers Or Dementia
In the early stages of Alzheimers disease or another type of dementia, your loved one may not need much caregiving assistance. Rather, your role initially may be to help them come to terms with their diagnosis, plan for the future, and stay as active, healthy, and engaged as possible.
Accept the diagnosis. Accepting a dementia diagnosis can be just as difficult for family members as it for the patient. Allow yourself and your loved one time to process the news, transition to the new situation, and grieve your losses. But dont let denial prevent you from seeking early intervention.
Deal with conflicting emotions. Feelings of anger, frustration, disbelief, grief, denial, and fear are common in the early stages of Alzheimers or dementiafor both the patient and you, the caregiver. Let your loved one express what theyre feeling and encourage them to continue pursuing activities that add meaning and purpose to their life. To deal with your own fears, doubts, and sadness, find others you can confide in.
Make use of available resources. There are a wealth of community and online resources to help you provide effective care on this journey. Start by finding the Alzheimers Association in your country . These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups.
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