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How Many Caregivers Are Caring For Parents With Dementia

Caregiving In Rural Areas

Supporting dementia carers: care about those who care for others
  • More than half of the 65 million Americans living in rural areas are over the age of 50. Elders in rural areas are more likely to reside alone, near or at the poverty level, and suffer from a chronic condition or physical disability. They require an average of 46 miles of travel to get to the nearest health professional.
  • 3-6 million Americans are distance caregivers who provide care for a family member that resides an average of 450 miles away.
  • About 51% of caregivers in rural areas use community-based services.

Assisting With Household Tasks Self

Nearly all caregivers help older adults in need of care with household tasks such as shopping, laundry, housework, meals, transportation, bills, money management, and home maintenance . As indicated in , these responsibilities are often daily ones if the older adult needs help because of health or functional limitations: 44 percent of caregivers reported helping with chores every day or most days.

Percentage of caregivers who helped every day or most days during the past month, by type of help, 2011. NOTES: Includes family caregivers of Medicare beneficiaries age 65 and older in the continental United States who resided in community or residential

Self-care and mobility tasks include walking, transferring , bathing or showering, grooming, dressing, feeding, and toileting . Help with self-care tasks is a frequent and sometimes daily role for some caregivers; 17.9 percent of caregivers reported helping with self-care every day or most days.

Type and Frequency of Family Caregiver Tasks in the Past Month, by Care Recipient’s Dementia Status and Need for Help with Self-Care, by Percentage, 2011.

How The Caregivers Are Helping

Caregivers today are providing similar types and quantities of assistance to their loved one as they were in 2015.

Caregivers are still offering around 24 hours of unpaid care per week, and nearly all help with Instrumental Activities of Daily Living , which can include things like cooking, cleaning, transportation, shopping, and more. Sixty percent of caregivers are helping their care recipient with Activities of Daily Living , which includes things like bathing, dressing, eating, and using the toilet. Nearly six out of 10 caregivers are also assisting with medical/nursing tasks.

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The State Of Unpaid Family Caregiving In The Us

Caregiving is an important topic that directly impacts the lives of millions of Americans. Approximately every five years, the National Alliance for Caregiving and AARP conduct a survey to look at family caregiving in our nation. They have released their most recent research report, Caregiving in the U.S. 2020, and some of their findings are quite surprising.

Have Regular Family Meetings

7 Dementia Care Tips for Family Caregivers

Sit down on a regular basis to talk about how caregiving is impacting the family as a whole. Talk about the impact of the seniors condition on the family and address stress points and difficulties. Meet with a therapist or case manager if that will help to solve grievances.

Here are a few more ways to hold a successful meeting of the minds:

  • Create an agenda for the meeting
  • Try to stick to the facts rather than expressing personal opinions
  • Following the meeting, send a summary to all interested parties

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Figure 2 The Characteristics Of Older Adults With Advancing Dementia Differ By Care Setting

Socioeconomic and Demographic Characteristics of Medicare Enrollees Ages 65 and Older With Advancing Dementia, by Care Setting

Notes: All differences comparing home versus residential care versus nursing home significant at P> .05. The amount used in many states in 2012 to determine eligibility criteria for Medicaid-paid nursing home care was $25,000. Krista L. Harrison et al., Care Settings and Clinical Characteristics of Older Adults With Moderately Severe Dementia, Journal of the American Geriatric Society 67, no. 9 : 1907-12.

What We Owe Our Parents And Ourselves

Whether you find yourself as a caregiver for a parent out of love or duty or fulfillment of cultural and familial norms, there are certain things we absolutely owe our parents and ourselves. They are actually the same thing!

The essentials owed to both parent and yourself are love, happiness and fun. Be kind and show how much you love your parent and yourself. Do not expect reciprocation and gratitude from you parent. It is called caregiving, not care receiving.

Find as much happiness as you possibly can for your parent and you. Discover separately what makes your parent and then you happy. Snatch as much happiness out of this world as possible. Set time aside for you to do what you love and enjoy that time one hundred percent guilt free.

Your parent gave you life and they meant for you to relish and savor it. You may think happiness and fun are the same thing, but they are not. Happiness is a more peaceful, satisfying feeling that permeates through possibly long time periods. Fun is sheer joy, amusement and playfulness.

If achievable, make sure your parent has fun. If your parent is at some point incapable of having fun, be at peace knowing you can only give to your potential. You, on the other hand, owe yourself activities and time for pure, childlike fun. Make sure to make this happen.

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Popular Caregiver Support Groups

Studies show that unpaid caregivers of which there are an estimated 53 million in the U.S. alone, according to AARP  are at higher risk for physical injury, financial strain and emotional duress caused by high stress levels. One of the keys to self-care and alleviating stress for caregivers is finding support from other caregivers.

Increasingly and especially during the pandemic many caregivers are finding support online. The benefit of these groups is that theyre available whenever you have the time to engage. But some caregivers are looking for more personal engagement and choose in-person support groups . Below, well take a look at both options.

While there are dozens of national websites and forums for family and friends of senior loved ones to get encouragement, Facebook has seemed to take over in the past few years for popularity and accessibility. Since most everyone is on Facebook, its easy to join a group and begin interacting with the community right away. These are the highest-ranked Facebook groups currently being used to support and encourage caregivers:

Dont Neglect Your Own Needs

Family Caregivers of People with Dementia

By always focusing so diligently on your loved ones needs throughout the progression of their dementia, its easy to fall into the trap of neglecting your own welfare. If youre not getting the physical and emotional support you need, you wont be able to provide the best level of care, and youre more likely to become overwhelmed and suffer burnout.

Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. Its easy to abandon the people and activities you love when youre mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.

Caregiver support

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Living Alone With Dementia

One of the most difficult conversations to have with a senior with Alzheimers involves discussing living arrangements. Living alone with dementia is risky, but most seniors prefer to age in place. As the disease progresses, risks of falling, wandering, leaving a stove on, forgetting medications, or experiencing isolation and loneliness increase.

The stage of the disease and safety are important factors to consider when discussing aging in place. Now is the time to consider in home care, support that can prove invaluable to a senior coping with dementia.

When a family comes to me with concerns about a loved one with dementia, I often recommend a home care provider so the older adult can safely remain at home for as long as possible. states Jill W. Love, Geriatric Care Manager with Peters and Love. Caregivers provide valuable assistance with meal preparation, personal care, medication reminders, companionship, supervision, and so much more. Since caregivers get to know their clients very well, they have the ability to improve the older adults quality of life through engagement and personalized care.  As a geriatric care manager, I rely on the caregivers observations and insights when considering changes to the care plan, and I consider them an integral part of the care team.

Sometimes, its easier to take smaller steps rather than make one big change. If your aging parent expresses that they want to remain at home:

Guide To Caring For A Parent With Dementia At Home

When caring for a parent with dementia at home, a family caregivers decisions suddenly feel more complex. Even for the most prepared family members, the weight of the new diagnosis can seem overwhelming.

Having an understanding of what dementia looks like helps to make caring for the senior easier. Arm yourself with information about how the disease progresses. Explore tips for supporting your parent with dementia and find support groups to minimize anxiety and uncertainty. Combined, this knowledge increases opportunities for a higher quality of life.

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Tips For Changes In Communication And Behavior For People With Dementia

Communication can be hard for people with Alzheimers and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:

  • Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
  • Allow the person to keep as much control in his or her life as possible.
  • Respect the persons personal space.
  • Build quiet times into the day, along with activities.
  • Keep well-loved objects and photographs around the house to help the person feel more secure.
  • Remind the person who you are if he or she doesnt remember, but try not to say, Dont you remember?
  • Encourage a two-way conversation for as long as possible.
  • Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.

Monetary Costs Of Dementia Care Shouldered By Families

Caregivers and Family Members caring for someone Dementia ...

Dementia care is more costly than other conditions and puts a disproportionate burden on families. What people with dementia need most is supervision and help with personal care and household activitiesservices not covered by Medicarewhereas the drugs or surgeries commonly used to treat conditions such as heart disease and cancer are covered.

The lifetime cost of dementia is high, report researchers from the RAND Corporation. Using HRS data, RAND researchers found that those who live with dementia for at least six months pay, on average, $38,500 more out of pocket from age 65 to death .24 These dementia-related costs are nearly all composed of spending on nursing homes.

Similarly, Amy Kelley and colleagues used HRS data to show that health care for Medicare beneficiaries in the last five years of life was far more costly and involved significantly higher uncovered out-of-pocket costs for those with dementia than for those with heart disease, cancer, or other medical conditions.25 Out-of-pocket costs averaged $62,000 for people with dementia, more than 80% higher than for someone with heart disease or cancer.

The challenge, according to the researchers, is that Medicare does not cover health-related expenses most valuable to those with chronic diseases or a life-limiting illness, such as homecare services, equipment, and non-rehabilitative nursing home care. These costs are largely borne by individuals and families, particularly among vulnerable subgroups.26

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Who Are Caregivers And What Do They Do

The Alzheimers Association® states that caregivers attend to another persons health needs, including bathing and dressing, paying bills, shopping, providing transportation and offering their support to those with dementia. More than 16 million Americans provide unpaid care for seniors with Alzheimers disease and other forms of dementia. Many times, they tend to stay behind the scenes, but in the Alzheimers Associations 2018 Facts and Figures report, we can get an even bigger picture about what they experience and go through when a loved one is either diagnosed or living with dementia.

How To Consider And Discuss Goals Of Care

Understanding goals of care

Goals of care is a phrase thats widely used by health professionals, but hasnt yet caught on with the public. This is perhaps because many health experts seem to prefer to phrase more like Talk about what matters most with your doctor.

Myself, I explain goals of care to my patients and their families, because once they understand the idea, I find it becomes easier for us to revise the care plan, and also to navigate tricky situations.

So what are goals of care, and what does it mean to discuss them?

To begin with, its helpful to remember that medical care generally serves to help all people with three key goals:

  • To live longer. We do this by intervening when there is a life-threatening emergency, by operating or using life-support technologies or even by providing antibiotics and specialized medications. We also do this by managing chronic conditions, to prevent them from progressing or causing hospitalizations. And then we do this by using preventive strategies, to reduce a persons risk of dying or experiencing a life-threatening event such as a heart attack or stroke.
  • To feel better. This means helping people address pain, shortness of breath, depression, anxiety, or any other issue that might cause distress.

Ideally, medical care helps people with all three of these goals, because all three are usually quite important to people.

How to sort out goals of care

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The Rules Of Caregiving For Aging Parents

So, what are the rules? What do we owe our parents and what do we owe ourselves? As you have probably already guessed, there is no set answer, but it is certainly worth a discussion to make this time in your life and your parents life as smooth and enjoyable as possible.

First of all, we owe our parents, at the very most, not more than we can give. Its been said many ways. You cannot pour from an empty cup. Put on your oxygen mask first before putting the oxygen mask on your child. You are not required to set yourself on fire to keep others warm.

The point being, you need to take care of yourself first in order to take care of a parent. Maintain your health so that you can be there for your parent as long as possible and at your best version of yourself. So, eat healthy. Get exercise. Make sure you plan fun things for yourself to do on your own so that your mental state is happy and clear.

Pay Attention To Your Loved Ones Changing Physical Needs

Caregiver Training: Refusal to Bathe | UCLA Alzheimer’s and Dementia Care

When caring for people with dementia, most of the attention goes toward a loved ones changing mental state, especially memory problems. But dementia patients also have changing physical needs that sometimes get missed or mistaken for behavioral problems from dementia.

Keep an eye out for changes in:

  • The ability to dress oneself. This means caregivers should purchase clothes that are easy to wear, and that wont cause skin irritation.
  • The ability to communicate or even speak Remaining flexible and finding different ways to communicate can make a world of difference.
  • Eating and swallowing. Pureed foods can be a blessing should this occur.

Read Also: What Is Early Onset Dementia

Best For Parents With Kids With Special Needs: Parent To Parent Usa

Parent to Parent USA

As a parent or caregiver who cares for a disabled child, you may share many things in common with others going through similar circumstances; but some challenges are specific to each childs type of disability. Consider how a child with autism differs drastically in the type of caregiving required, compared to a child with muscular dystrophy.

Parent to Parent USA is a non-profit organization that is aware of the unique challenges parents have when dealing with different types of disabilities; so they created a free program that matches parents via a 1-to-1 support partnering relationship.

The match is made according to the type of disability each child has been diagnosed with. That way, caregivers can share information about specific resources and experiences, solve problems, and help to give and get emotional support. You can find local resources in your local community on the Parent to Parent USA website, including how to sign up and a Spanish language version of the website.

Technology To The Rescue

The rise in technological solutions to in-home care needs represents a tremendous boon for caregivers. From smart homes to robots, apps to digital diagnostics, “tech support” has never been stronger for the caregiving community. Millennials often the grandchildren of those needing care are at the forefront of these innovations, since they have a vested interest in ensuring their beloved grandparents are able to enjoy the best later life possible.

Some standout developments for caregiver support:

When only the real deal will do, Hasbro has it handled, with Joy For All Companion Pets: animatronic “pets” that deliver tactile and auditory stimulation to seniors with dementia, providing comfort, care, and a calming influence and they never need to be fed or walked.

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People Caring For Seniors With Dementia Put In More Hours Are More Likely To Feel Distress

Unpaid caregivers of seniors with dementia put in more hours and experience higher levels of distress than those providing care for other seniors.

Defined as family members, neighbours and friends who take on an unpaid caring role to support someone with a diminishing physical ability, a debilitating cognitive condition or a chronic life-limiting illness, these caregivers would benefit from increased community support to help them manage care for both their loved ones and themselves.

Informal caregivers sacrifice their own time, finances and health in order to care for a loved one with dementia, says the National Strategy for Dementia-Friendly Communities. Caregivers shoulder a tremendous responsibility as they strive to provide the attention and care that is necessary.

CIHIs analysis finds that several key factors affect unpaid caregivers of seniors living with dementia. We spoke with 2 Canadian caregivers whose experiences reflect those findings.

Assist With Instrumental Activities Of Daily Living

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Instrumental activities of daily living are defined as activities that allow an individual to live independently in a community. IADLs include activities like cooking, cleaning, transportation, laundry, medication management, shopping and managing finances. While the ability to perform IADLs is not necessarily required for functional living, these tasks do have an impact on a seniors ability to live independently and quality of life.

Read:Instrumental Activities of Daily Living Defined

Ninety-nine percent of family caregivers provide help with instrumental activities of daily living. The most common types of IADL support family caregivers provide are transportation assistance , assistance with grocery shopping , help with housework and meal preparation . These are often the first tasks that seniors require assistance with, but their needs will likely increase as their abilities decrease over time. For many Americans, stepping in to help a senior perform IADLs signals the beginning of the caregiving journey.

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Spend Time With Your Partner And Children

Caring for someone with dementia can quickly become the focus of attention for the household. Young children and spouses can feel excluded and left behind. Take time to schedule activities for just the family. A family member or professional caregiver can stay with your loved one and bring special activities so it is a fun evening for him or her as well.

  • Create a family calendar. This should include not just appointments, but fun activities centered on togetherness.
  • Find a support system. Being the primary caregiver doesnt mean one has to be the only caregiver. Create a tag team and let other family members get involved.
  • Talk things through. Shine a light on the factors that may stress relationships by holding a family meeting.

Months And Years Providing Care

  • The average duration of a caregiverâs role is 4 years.
  • Only 30% of caregivers provide care for less than a year.
  • 24% of caregivers provide care for more than 5 years.
  • 15% of caregivers provide care for 10 or more years. Higher-hour caregivers are twice as likely to have been in their caregiving role for 10 years or more.
  • Regardless of employment status, unpaid caregivers report that positive activities in their respective daily lives are reduced by 27.2% as a result of their caregiving responsibilities. This effect is three times greater in their personal lives than in their professional lives.
  • Measured by duration of care, Alzheimerâs and dementia caregivers provide care on average 1-4 years more than caregivers caring for someone with an illness other than Alzheimerâs disease. They are also more likely to be providing care for five years or longer.
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    Dementia Care At Home: A Step

    As the disease progresses, so will the needs of your loved one. You can care for the physical needs of your loved one by closely coordinating care with his or her physician. Just as important is your ability to remain a caregiver for the long term. Having a strong care team by your side can make this easier.

    The State Of Caregiving 2018

    Family Caregiver Stress Relief

    As the Baby Boom generation ages, 10,000 people turn 65 daily. For the first time in U.S. history, there are more than 50 million seniors. This trend is expected to continue until 2029, when the youngest Baby Boomers will turn 65 years old. A third of those older than 65 live alone, and half of the “oldest old” those beyond 85 are on their own at this late life stage.

    The aging population, coupled with the high cost of senior living and in-home care, is driving a growing demand for family caregivers a trend that is expected to continue through the next several decades and beyond.

    This guide provides a comprehensive look at the state of caregiving in 2018, as well as information to help family caregivers move forward with practical tools they can use today. 

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    How To Get Expert Help Caring For A Relative With Dementia

    Dealing with dementia parents comes with unique difficulties and challenges. Dementia affects memory loss and can also cause changes in behavior.

    In this article, we listed four of the major difficulties involved in caring for someone with dementia:

    • Communication
    • Wandering
    • Sleeplessness

    We also provided some dementia tips and tricks for family caregivers to help answer the question, How do you care for an elderly person with dementia? 

    But even with all this information and these dementia tips for carers helping someone with dementia, you may need professional assistance.

    At Stowell Associates, we dedicate ourselves to supporting family caregivers and providing hands-on help to aging adults. We offer three services that can significantly benefit you if youre unsure how to help seniors with dementia:

  • Care Coaching:Care Coaching is a way for family caregivers to remotely talk with and get help from an expert elder care professional. You get 75 minutes of call time each month with a Care Coach who will provide you with valuable tools and resources to help you care for your loved one.
  • Respite Care: For family caregivers who need help a few days a week, theres respite care. Respite caregivers enter into you or your loved ones home to assist your loved one with daily life tasks.
  • Contact us today to talk with a Care Advisor and receive professional insight into the care that your loved one needs.


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