Words of Comfort for Family Caregivers of Loved Ones with Dementia

For many family caregivers of seniors with dementia, progressing with the disease through the years can bring change and sadness.

It is also common for caregivers to subject themselves to a lot of self-questioning, of which these are a few:

Where is the person you once knew?

Are you doing all that you can, all that they desire you to do?

Where do they go in their mind during their silence?

Are they remembering the good times in their life?

Is their life filled with contentment?

No one can really answer these questions for family caregivers especially as the disease of dementia progresses to its final stages.

You have been caring for them and their degenerative disease of memory loss for many years and wonder why them?

A Poem for Dementia Caregivers

We found this poem and felt it might help caregivers of seniors with dementia remember that their loved one is still with them.

They are still in need of your love, caring, and devotion even — or maybe especially — when they can’t ask for it or thank you.

We hope you find inspiration and peace in these words…

 

10 Requests from an Alzheimer’s Patient

Please be patient with me.
I am the helpless victim of a brain disease.

Talk to me.
Even though I cannot always answer.

Be kind to me.
Each day of my life is a desperate struggle.

Consider my feelings.
They are still very much alive within me.

Treat me with dignity and respect.
As I would have gladly treated you.

Remember my past.
For I was once a healthy vibrant person.

Remember my present.
For I am still living.

Remember my future.
Though it may seem bleak to you.

Pray for me.
For I am a person who lingers in the mists of time and eternity.

Love me.
And the gifts of love you give will be a blessing forever…..

~Anonymous

Importance of Dementia Caregivers

Everyday you are special to the person with dementia for and about whom you care.

You are making a difference in their life, even if they can’t express it.

Remember always that you are where you need to be at a time most necessary to them.

You will never regret what you do today for your senior loved one with dementia.

Thank you for your perseverance and dedication!

 

Invitation to — The Shop at Senior Care Corner®

Time is the currency in shortest supply for many family caregivers of older adults.

Finding the answer to “what do I do when…” is often a challenge as well.

Helping solve both of those challenges for family caregivers is a big part of what drove us to create Senior Care Corner® — and what motivates us to put in all the work to keep it going.

Being an even bigger part of the solution has driven us to develop The Shop at Senior Care Corner®, to help caregivers and other family members of seniors answer even more questions, including:

  • What can I read to get more in depth information about caring for my senior loved one?
  • How do I help modify their home to enable them to achieve their goal of aging in place successfully?
  • What can I do to better care for my own needs while I am caring for my senior loved one and the rest of my family?
  • How do I show appreciation for the family members and professional helpers caring for my senior loved ones and what I can give them to make their work a little easier?

The Shop at Senior Care Corner

Knowing how tough family caregivers can find it to shop, we are intentionally keeping the selection at The Shop at Senior Care Corner to a manageable level, helping you avoid the time and confusion associated with going through the thousands (or millions) of items found at many retailers.

We also know security and privacy are huge concerns and designed the Store so you actually make your purchases, arrange for shipping, and have the protection of return policies at major retailers — Amazon.com in most cases. We never see your personal info, payment method, or what you bought.

The Shop at Senior Care Corner is initially “stocked” based on our own experiences and what we hear from other family caregivers.

Our departments include:

  • Books for Caregivers — Selection of books to help inform caregivers, providing information regarding what senior loved ones are experiencing and guidance in meeting their needs
  • Technology — Devices and solutions covering a variety of areas and needs for seniors and their family caregivers
  • Home Safety — Solutions caregivers can use to help make the homes of senior loved ones safer for successful aging in place
  • Healthcare Devices — Home health devices to help make aging in place healthier for senior loved ones
  • Home Adaptive Aids — Equipment and solutions to help make a house not quite designed for older adults a home for aging in place
  • Smart Home Tech — Digital devices to help make aging in place more convenient (and maybe more fun) for senior loved ones
  • Activities — Things seniors and family caregivers can do together
  • Computing — Home computing equipment and accessories such as printers, keyboards, monitors, and more

A Work in Progress

The Shop at Senior Care Corner currently features items we have chosen, but we realize family caregivers – and the seniors for whom they care – have a wide variety of needs, beyond what we have in the Store now.

Please let us know how we can improve the Store to better meet your needs.

Should we add departments? We have some additions in mind but would like to hear what you have to say.

Are there products you would like to see us add to the current departments?

We look forward to your comments. In the meantime . . .

Happy Shopping!

Caregiver Stress Relievers – Reminders for Your Well-Being

Being a family caregiver is certainly fulfilling and a way to give back to the senior who gave you so much during your lifetime.

However, it can be a source of stress for caregivers who are already stretched thin between their career and their family life.

Some researchers categorize caregiver stress as chronic stress experience because it is both a psychological and physical stress which occurs over extended periods of time.

Stress can impact the health of caregivers, so it is important to recognize it and do all you can to overcome the stressors in your life.

Impacts of Stress When Caregiving

Many family caregivers have firsthand experience of the impacts that providing care for older adults can have on them, both physically and emotionally.

Stress comes with the territory. Being stressed in no way changes our commitment to this role in the family.

Caregivers value their ability to nurture, support and facilitate the health and safety of their older adults. Your involvement usually allows senior loved ones to continue to live independently as they choose.

Physical effects of stress can occur for caregivers when these conditions are present:

  • Poor quality of diet and lack of quality nutrition
  • Failure to attend to their own preventive and routine medical health issues
  • Feelings of distress and depression
  • Advanced age
  • Amount of time and complexity of hands-on personal care activity required by senior care recipient – for example, daily or more than 20 hours a week of personal care for ADLs or activities of daily living such as bathing, toileting, feeding, transferring, ambulation, etc.
  • Extended duration in years of caregiving responsibilities – longer time involved in caring versus new-onset caring
  • Caring for a person with dementia
  • Lack of adequate sleep or regular physical activity

Caregiving stress can be manifested in frustration, exhaustion, anger, mood swings, feeling deserted or isolated, sadness, weight changes, pain, headaches, weakened immune systems, or illness.

Caregiver Stress Reducers

We know stress is inevitable when caring for others. How we cope with the everyday people and situations in our lives can make the difference between healthy caregiving and burnout.

Here are some ideas to help you adopt behaviors that will help you reduce your stress.

  1. Go to bed on time and get enough sleep.
  2. Say “No” to requests that won’t fit into your time schedule or that will compromise your mental health.
  3. Delegate tasks to capable others. It isn’t a failure to let others help you.
  4. Simplify and unclutter your life.
  5. Take one day at a time. Spread out big changes and difficult projects over time; don’t lump the hard things all together.
  6. Separate worries from concerns. If a situation is a concern, do what you can do and let go of the anxiety. If you can’t do anything about the situation, forget it.
  7. Have backups: an extra car key in your wallet, an extra house key buried in the garden, extra stamps, etc.
  8. K.M.S. (Keep Mouth Shut). This single piece of advice can prevent an enormous amount of trouble.
  9. Get enough exercise.
  10. Eat right.
  11. Get organized so everything has its place.
  12. Every day, find time alone. Relax and refresh.
  13. Having problems? Join a support group and/or see a counselor. Try to nip small problems in the bud.
  14. Remember that the shortest bridge between despair and hope is often a good night’s sleep.
  15. Laugh and Laugh some more!
  16. Develop a forgiving attitude – most people are doing the best they can just like you.
  17. Be kind to unkind people they probably need it the most.
  18. Talk less; listen more.
  19. Slow down!
  20. Every night before bed, think on one thing you’re grateful for that you’ve never been grateful for before.

These are just a few things you can do to release some of your caregiving stress.

There are other beneficial strategies that family caregivers can practice to cope with stress, such as meditation, yoga, massage therapy, hot baths, learning more shortcuts or techniques to make caring easier, scheduling time for yourself and things you enjoy, flexible work schedule, aroma therapy, and other relaxation tactics.

It is true that some stress can motivate us to react appropriately to situations with which we may be faced. However, long-term stress can result in health problems such as the chronic stress of caregiving.

Physical and mental health issues can make caregivers unable to continue to care for their seniors. That is why it is imperative to cope with stress.

Family caregivers can do anything they are called upon to accomplish, but they can’t do everything!

When Our Senior Loved One Says NO – Family Caregiver Quick Tip

Appointment time for the doctor or hair dresser is fast approaching but your senior loved one is refusing to get out of their pajamas.

You need to go grocery shopping but can’t leave them home alone and they won’t get in the car.

It is time for a much needed shower but they won’t enter the bathroom, no matter how many times they are asked.

These scenarios and many more are encountered all too frequently by family caregivers.

In fact, research has shown that 77% of adult children think their parents are stubborn.

Unfortunately, their stubborn refusals impact the well-being of family caregivers. Anger and frustration at their behavior can quickly turn into resentment, which could change the way you care for them.

What is a frazzled family caregiver to do?

Strategies To Use When They Say NO

Finding coping strategies to help you deal with your senior loved one when they get stubborn and refuse, not only your advice about handling a caregiving situation, but refusal of care that you know is necessary, is important to their safety and your mental health.

Here are a few ideas to help you cope and perhaps even cajole them into doing what you think is important from A Place for Mom.

  1. Accept the situation. This is very difficult, but the reality is that your senior is an adult and should be able to make their own decisions when they have the information they need even when you don’t agree with them. The caveat here is if they are putting themselves in an unsafe situation. Sometimes you have to intervene.
  2. Decide how important the choice is. This is when you have to step back and decide if their decision is safe or if it will put them at risk. One example is them refusing to take all their medications. Are some medications essential and need to be given somehow or are there some like vitamins that they can live without? Would a liquid be easier for them or a patch that slowly delivers medication through their skin without the need to swallow — what are the options for medication administration without arguments? In other words, pick your battles and find workarounds.
  3. Don’t beat yourself up. Sometimes things are truly out of your control and all you can do is sit back and hope for the best, but be ready to take over when needed.
  4. Find an outside outlet for your feelings. Having a friend or family member with whom you can unleash your feelings, talk it out, and vent your emotions will help you maintain your calm, caring attitude toward your senior loved one and help you keep your sanity. Perhaps an online chat or Facebook group who are experiencing what you are can give you support.
  5. Try to understand the motivation behind their behavior. Try to determine the root cause of their behavior. Are they trying to make you upset or worry, is this response a way to hide their inability to do what is asked, is the behavior a habit, do they understand what is being asked or are they confused, are they depressed and acting out, or are they trying to be independent and make their own decisions (good or bad)? Understanding the why of it might help you create a plan of action for the how of it to help you overcome the behavior.

Every day is different when caring for older adults. Some days will be good and others will be a struggle.

Being a family caregiver is an important role that many of us are called upon to fulfill.

Staying healthy physically and mentally as a family caregiver should not be overlooked or pushed to the bottom of the list. Therefore, finding ways to cope with your daily challenges will help them and you!

Additional Resources

Here are a few more resources that will help you handle challenging behaviors.

 




Care Plans – Ensuring Caregiving Addresses Wants and Needs

Have you or your senior loved one done an advance care plan?

You may have urged your senior loved one to execute legal documents that spell out their wishes at the end of life. You may have also completed documents such as a DNR (do not resuscitate) order to dictate how you wish to receive medical interventions. But has your senior (or you as a caregiver) set forth your personal desires for caring?

Making wishes known, not just about who gets the desk or car, but how you want to be cared for when you can no longer express your wishes is important for family caregivers and seniors to document no matter their age.

These decisions are very personal and should be guided by your values, preferences, and life beliefs.

Caring for older adults, as well as considering our own needs as caregivers, should involve creating plans for care.

Common Desires to Include in a Care Plan

One in four households currently includes at least one person who is serving as a caregiver.

As we all age, the prevalence of chronic disease increases, affecting our need for care.

About one-fourth of people with chronic conditions are limited in their capacity to live independently and to do everything for themselves that needs to be done, such as personal care, housekeeping, or medication management. We may need help accomplishing these daily activities.

We usually have a specific way we like things done, too. Those should be spelled out in your care plan.

Here are some of the most common desires we all have as we age that should be included in our care plan:

  • Controlling our pain
  • Honoring our wishes
  • Be treated as a whole person
  • Receiving care in a homelike location instead of a facility
  • Being surrounded with people we love (or restrict those we don’t want to care for us)
  • Having enough money to cover our costs without leaving family to pay the bills
  • Living with dignity as we age up until death
  • Communicating effectively between person, family and healthcare providers

There are other things we can include in our personal care plan such as:

  • Arranging for your pet when you can no longer do it
  • Stating your desire for fresh flowers in your room
  • Wanting to keep certain family or friends involved or refusing them to be involved, depending on your relationship
  • Specifying the type of music to play when you are confined to your bed
  • Listing any other type of special consideration that is important to you or your senior loved one and could be easily overlooked when you can’t tell them what you like

Keeping Your Care Plan Updated

Your wishes expressed in your care plan can change as circumstances in your life change. They are not written in stone.

As a matter of fact, they should be reviewed regularly (at least annually) and updated as often as things or people change.

Perhaps the person you anticipate will give you care becomes incapacitated or moves to the other side of the country. You should change your wishes so that those needs be fulfilled by someone you designate.

Did you know that Medicare has a provision to pay your doctor or other healthcare provider to help your senior complete any advance care planning, either as part of their annual wellness visit or as a separate Part B service? It can be billed as many times as needed with no limits set on frequency by the Centers for Medicare Medicaid Services (CMS). Take advantage of this time to discuss future medical changes or potential long-term needs so that the care plan can reflect these issues.

Communicating the Plan to Everyone

Just as you would with legal documents for the end of life, once you and your senior loved one have created a personal advance care plan, it should be shared with significant family members, the established healthcare proxy, and the healthcare team.

As many as one third of us do not want to have CPR or other heroic measures but most of us do not share our wishes with our healthcare provider.

Older adults in the early stages of dementia are able to make decisions about future care on their own. However, the majority eventually will be unable to articulate their wishes for advance care planning and must rely on someone else to do so.

It is important to create an advanced care plan while cognition allows them to make decisions and make those decisions known. Once cognitive loss progresses, the ability to communicate decisions about their desired care will be lost.

Care Planning for Caregivers

Advance care planning is not just for those who are aging. An accident can happen to us at any age.

We should all have a plan, regardless of our age or health status. A life changing event can mean that we will be unable to express our own desires and need someone to speak for us using our personal care plan.

Important questions that should be addressed by family caregivers, but are often overlooked, include;

  • Who will care for your senior loved one when you are unable to do so?
  • Who will manage their care?
  • Where will they live?
  • Who will help pay the bills?
  • Who will be their advocate?

Enlisting the aid of the entire family will be an important part of seeing that not only your senior’s care is defined, but also yours as a family caregiver.

You may feel that taking time from your daily duties to consider and create an advance care plan is selfish. In reality, other family members will be thankful that you were thoughtful enough to guide them in providing care when the time comes.

Decisions about care made in advance are easier to follow than trying to think of what you (or your senior) might want family members to do.

It actually relieves their burden.

 




Importance of Respite for Family Caregivers and How To Find It

Family caregivers often spend long hours caring for senior loved ones and their immediate family members but take little time to care for themselves.

Telling someone “care for yourself so you can care for others” is so much easier said than done for family caregivers, who struggle to find the time they need to finish everything that needs to be done each day.

It is all too easy, however, to put your own personal needs on the back burner or on the ‘I’ll get to it later’ list.

When was the last time you went to the doctor for yourself?

How about the beauty shop for a haircut, manicure, or pedicure?

When was the last time you went to a movie, ate in a restaurant, or had a date with your partner?

I hear you laughing – too long??

Family caregivers need the gift of time to not only complete essential household tasks but to care for their own needs.

How can you get back time?

Respite for Caregivers

Respite is a great way to get back time for family caregivers.

What is respite? Respite is planned or emergency temporary care provided for caregivers.

Respite programs provide planned short-term and time-limited breaks for families as well as a positive experience for the older adult.

Getting a break to care for yourself while caregiving is essential. You will need a hand with daily tasks or personal care needs for your senior loved one so that you can go to the doctor, get a haircut, take a nap, visit friends, or getaway on vacation.

There is no failure in seeking out respite care. Caring for yourself will help you be a better caregiver.

Where to Find Respite

There are many avenues to find a respite solution that fits both your senior’s needs and yours as a caregiver.

Whether you need daily, weekly, or occasional respite, you will be able to find the care you seek in most areas of the country.

Here are some opportunities for respite:

  • Family and friends – enlisting the help of family members or friends to help you do every day tasks that can relieve you to care for yourself. Perhaps they can help cook meals, take your senior to appointments, or just spend time with them while you get some rest.
  • Paid caregivers – hiring caregivers from a home health agency to provide support such as household chores, personal care, shopping, cooking, companionship, and other tasks can allow you to do things you may need to do, including remaining in the work force.
  • Day programs – senior centers can keep your loved one safe during the day, occupied with activities or learning something new. They are great places for socialization with their peers. Usually they serve a hot, nutritious meal and many provide transportation as well. There may be a fee for this program.
  • Disease specific (therapeutic) respite programs including dementia respite – these programs provide failure free activities, socialization and mental stimulation for people with dementia and give their caregivers a much needed break from caregiving. They may be run by faith-based organizations or other nonprofit groups to help support those challenged by dementia. A small fee for supplies and food is customary.
  • Retreat – how would you like a retreat specifically designed to nourish and refresh those who daily put loved ones’ needs first and give care on a daily basis? There is a place that has been offering caregiver respite and a way to look at your role with a new vision and a renewed commitment to continue in that role, but with a resolve to care for yourself at a deeper level. This particular retreat takes place in St. Francis Retreat Center at Mepkin Abbey in Moncks Corner, SC. 
  • Out of home respite care in a facility – an assisted living facility, memory care, long term care facility, or even a hospice house will provide short-term care in their facility for up to a week (or longer as needed). This care is paid for by the senior or their caregiver and not covered under Medicare. It could be a weekly or per diem charge.
  • Palliative or hospice care – if your senior qualifies for this medical program, they can provide in-home care services that will help relieve some of your duties. This is covered by Medicare or Medicaid if your senior is qualified.

Help Paying for Respite

For many seniors and caregivers, paying for respite may be out of reach, even if the fees are small.

If your senior didn’t set aside enough funds to cover their retirement, healthcare and cost of living as they age, they probably don’t have the money to pay for supports such as respite or other long term support services (LTSS).

Sometimes a long-term care insurance policy may cover some of the costs of in-home care when a doctor says it is necessary. You should check your senior’s policy if they have one and use the benefits for which they have been paying for years.

There may be respite vouchers available to family caregivers through the State Lifespan Respite Grantees. Funded by the Administration for Community Living, US Department of Health and Human Services, State Lifespan Respite Programs or Projects are run by a designated state government lead agency, which works in collaboration with a state respite coalition and an Aging and Disability Resource Center Program/No Wrong Door System. The goal is supporting a statewide system of coordinated, community-based respite for family caregivers caring for individuals with special needs of all ages. Currently 37 states participate in the program. Here is a link to more information to help you access these services.

Some disease specific organizations, such as the Alzheimer’s Association, also have respite funds available to eligible caregivers in the form of vouchers that can help with the cost of respite.

Your local Area Agency on Aging can help you locate other resources to help fund respite care so that you can continue to provide care for your senior loved one.

You can also see if there are more benefits for which your senior may be eligible to offset the costs of care through this government resource website.

Seniors who are veterans can apply for in-home support through the Veteran’s Administration. This is an often overlooked source of assistance that should be investigated for any veteran.

Benefits of Respite

The obvious benefit for respite care is that family caregivers can begin to find time to care for themselves. Getting a rest, caring for your own health needs, working, socializing with friends, and getting mental health breaks is good for caregivers and essential to continue to be an effective caregiver.

However, there are other benefits for our senior loved ones when family caregivers get the support they need.

Getting as much support for seniors can prolong the time spent living independently at home. This can delay when placement in a facility becomes the only safe option.

Caregivers can avoid the potential for neglect or even abuse of their senior loved ones when frustration, anger, and fatigue are remedied by help from others in the form of respite. Caregivers can display their emotions by yelling, striking out at seniors or neglecting their needs when fatigue sets in. A nap or walk can make a big difference when tempers flare.

Accepting respite is not a failure but a good decision for both caregivers and seniors receiving care.

Seeking the perfect solution or a combination of more than one will make a big difference in everyone’s life.

 




Transforming Family Caregiving — Conversation with Seniorlink on the Senior Care Corner® Podcast

Family caregiving, as we have long discussed, is often a thankless, solitary labor of love for those providing care for senior loved ones.

The tremendous contributions of family caregivers have likewise failed to get their deserved recognition from the healthcare system or government agencies and officials.

None of that ruffles family caregivers, of course, as they are committed to caring. Besides, between caring for their senior loved ones and everything else going on in their lives, family caregivers often don’t have time to think about such things.

Flying under the radar like this, though, has meant family caregivers and the loved ones for whom they care have not been getting support they could use, support that could readily be justified based on the benefits our healthcare system realizes from their family caregiving.

In this episode of the Senior Care Corner® podcast, we’re pleased to explain two examples of how that may be changing.

  • Our family caregiver interest topic for the episode is a discussion of the RAISE Act, which became law earlier this year.
  • We’re excited to be sharing a conversation with Jay Patel of Seniorlink, a company that is transforming family caregiving.

Click on the ▷ below to play the podcast (note: you can continue reading while you listen if you want)

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RAISE Act

In January, 2018, the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017 became law after bipartisan sponsorship and support in Congress.

The RAISE Act, as it is (fortunately) better known, is a signal that those at the highest levels of the US government are taking notice of the contributions and needs of family caregivers.

As you will hear in our discussion on the podcast, the RAISE act doesn’t directly make changes that help meet the needs of family caregivers or the seniors for whom they care, but it’s an important first step that will hopefully result in future actions by government agencies and/or Congress.

Conversation with Jay Patel of Seniorlink

We first encountered Seniorlink at CES®, where we had an enlightening conversation with Tom Reilly, the company’s President and CEO. What we learned at CES was enough to get us excited about what Seniorlink is doing.

Jay Patel

After hearing more at Aging in American and getting chances to chat with Tom and Jay Patel, Seniorlink’s Clinical Transformation Officer, we knew we had to share their story with you and asked Jay to join us in a conversation we recorded for this podcast.

Who is Seniorlink? They do a good job of explaining it concisely on their website:

Seniorlink builds care collaboration solutions that combine human touch and technology to integrate and activate the entire care team, including case managers, care providers, family caregivers, and patients, resulting in high-quality, person-centered care and improved outcomes at a lower cost. 

As followers of Senior Care Corner know, our mission is all about enabling family caregivers to provide the best care possible to their senior loved ones while also caring for their own needs. A key focus area of ours is technology that improves the lives of seniors and family caregivers. It’s not surprising, then, that we are excited about the work of Seniorlink.

We hope you enjoy our conversation with Jay. We plan to follow the work of Seniorlink closely as they transform care and family caregiving, with updates to come in future articles and podcasts.

Links from This Episode

Stay Tuned!

We hope you enjoy this reboot episode of the Senior Care Corner Podcast and find it informative.

Stay tuned for future episodes and check back regularly to read our articles in the meantime or signup in the box at the upper right on our website to receive our twice-monthly updates. We ask no information other than your email address, will use it only to send the updates, and WILL NOT provide it to anyone else.

 




 

Alzheimer’s & Dementia Impacts — Actions for Caregivers

Alzheimer’s and related dementias touch the lives of us all.

Most people are either personally caring for a loved one with dementia or know someone who is living with dementia or caring for a person with dementia (or have it themselves).

It has become rare to not be affected by dementia.

Unpaid family caregivers are on the front lines trying to navigate the maze of balancing caregiving and work/life, learning about the latest advances, and doing what they can to care for themselves.

New information, hopeful research discoveries, and tools for caregivers appear almost daily.

We want to update family caregivers and give you some actionable items to help you on your caregiving journey.

Latest Dementia Statistics

The recent Alzheimer’s Association 2018 Facts and Figures report details the latest information in dementia prevalence:

  • Every 65 seconds someone in the US is diagnosed with Alzheimer’s Disease
  • 7 million people are currently affected in the US; of those 5.5 million are over 65
  • 1 in 10 people over 65 have Alzheimer’s (the greatest risk factor is age)
  • 2/3 of those diagnosed with Alzheimer’s are women
  • 1 in 3 people die from Alzheimer’s or related dementias annually
  • 20 years before symptoms appear the brain becomes damaged
  • Because Alzheimer’s dementia is underdiagnosed and underreported, a large portion of Americans with Alzheimer’s may not know they have it

You can see more in this video from the Alzheimer’s Association.

Effects on Caregivers of People with Dementia

Family caregivers providing unpaid care for their loved ones with dementia don’t regret their decision to care for family members in need. Unfortunately, that doesn’t mean they are free from consequences of being a caregiver.

Here are some interesting tidbits about family caregivers and how dementia affects them:

  • 1 in 3 caregivers are over 65 themselves
  • Among primary caregivers of people with dementia, over half take care of their parents
  • It is estimated that 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer’s or related dementia
  • National surveys have found that approximately one quarter of dementia caregivers are “sandwich generation” caregivers, caring for their older loved ones while also caring for their children
  • More than 6 in 10 (63%) Alzheimer’s caregivers expect to continue having care responsibilities for the next 5 years
  • 3 primary reasons caregivers provide care to a person with Alzheimer’s
    • desire to keep a family member or friend at home (65% percent)
    • proximity to the person with dementia (48%)
    • caregiver’s perceived obligation as a spouse or partner (38%)
  • 59% of family caregivers rated the emotional stress of caregiving for someone with dementia as high or very high
  • 30% to 40 % of family caregivers of people with dementia suffer from depression
  • Many caregivers of people with Alzheimer’s or other dementias provide help alone
  • 74% of caregivers of people with dementia reported that they were “somewhat concerned” to “very concerned” about maintaining their own health
  • 6 in 10 caregivers of people with dementia were employed while giving care
  • Many caregivers of people with dementia: went in late or left their job early, went from full to part time or cut back hours, took leave of absence, or had to leave their job to be a caregiver
  • In 2016, dementia caregivers reported nearly twice the average out-of-pocket costs ($10,697) of non-dementia caregivers ($5,785)
  • The measure of burden of a disease indicates that Alzheimer’s is a very burdensome disease, not only to the patients but also to their families and informal caregivers; the sum of the number of years of life lost due to premature mortality and the number of years lived with disability, totaled across all those with the disease or injury

Impact of Alzheimer’s and Related Dementias

Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia. The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other cognitive skills that affect a person’s ability to perform everyday activities. These difficulties occur because nerve cells (neurons) have been damaged or destroyed.

The progressive accumulation of the protein fragment beta-amyloid (plaques) in the brain and twisted strands of the protein tau (tangles) eventually damage the neurons.

Basic bodily functions controlled by the brain, such as walking and swallowing are involved when nerve cells in the brain are damaged. Difficulty remembering names, dates or events, counting money or balancing a checkbook, changes in mood, and depression are early symptoms.

People in the final stages of the disease are bed-bound and require around-the-clock care.

Alzheimer’s disease is ultimately fatal.

Actions That Improve Living with Dementia

Maintaining the highest quality of life as the disease progresses is the best treatment at this time until improved medication management or a cure is found.

Interventions can improve the health and well-being of dementia caregivers by relieving the negative aspects of caregiving as well.

Here are science-based steps and interventions family caregivers and seniors with dementia can take:

  1. Exercise – both aerobic exercise and a combination of aerobic and non-aerobic exercise had positive effects on cognitive function according to research
  2. Cognitive stimulation – activities such as object categorization activities to reality orientation exercises (chores, folding wash, puzzles, word games, naming objects, arts, cooking, etc.). No single type of cognitive stimulation was identified as being more effective than another. Benefits to cognitive function lasted up to 3 months after cognitive stimulation activities ended. It is interesting to note that cognitive stimulation did not impact mood, challenging behaviors or ability to perform activities of daily living.
  3. Active management of Alzheimer’s and other dementias can improve quality of life for affected individuals and their caregivers such as: appropriate use of available treatment options, management of coexisting medical conditions, participation in activities that are meaningful and bring purpose to one’s life, connect with others living with dementia, becoming educated about the disease and planning for the future.
  4. Respite – planned, temporary relief for the caregiver through the provision of substitute care; examples include adult day services and in-home or institutional respite for a certain number of weekly hours.
  5. Home care support – getting help with instrumental and personal activities of daily living such as housework, shopping, cooking, medication management, bathing, grooming, feeding, toileting and transferring.
  6. Managing behavioral symptoms including aggressive behavior, wandering, depressive mood, agitation, anxiety, repetitive activity and nighttime disturbances.
  7. Finding and using support services such as support groups and caregiving training.
  8. Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with other family members about care, decision-making and arrangements for respite for the main caregiver.

Caring for Loved Ones with Dementia

Caring for a person with dementia is a duty family caregivers don’t regret. It can be fulfilling, exhausting, frustrating, maddening, joyful and a challenge you will be glad you accepted.

It is true that there will be days that are difficult as well as the days you will treasure. Getting all the help you can and learning as much as possible will make your journey a bit easier.

Care for yourself too so you can continue to provide care for as long as the person with dementia needs you.

 

Family Caregivers of Seniors — What Makes Somebody One & What Do They Look Like?

Millions of us are family caregivers to senior loved ones and the numbers are growing rapidly with the senior population.

No, we’re not going to talk statistics here, in part because we think the official numbers well undercount the real number of family caregivers.

More importantly, though, talking about “millions” misses the point that being a family caregiver is a personal thing for each one of us and the loved one for and about whom we care.

When talking with others, we often hear confusion — or at least differences in definition — about what makes somebody a family caregiver and whether they, themselves, “qualify” based on the role they fill for their loved one.

What Makes Someone a Family Caregiver?

As Kathy noted in an earlier article (“AHA! The Moment You Realize You’re a Family Caregiver to an Aging Loved One“), many don’t foresee becoming a caregiver to a senior loved one or, if they do, can’t predict when their care will first be needed.

Some family caregivers are abruptly thrust into the role, such as in response to a sudden illness of, or serious fall by, a parent or grandparent. Often, though, they realize their role of caregiver has grown gradually, based on their senior loved one’s needs.

Just what does it mean, though, to be providing care for a senior loved one? We use a broad definition, one that encompasses most anything a family member might do to make their senior loved one’s life safer, healthier, more comfortable, or more enjoyable.

That’s right, even making their life more fun!

These are activities that can make you a family caregiver if you perform them for senior loved ones.

  • Helping them get out of bed and dressed for the coming day
  • Preparing meals, even if just the occasional meal you bring by their house
  • Driving them to a doctor’s appointment, shopping, or a social activity
  • Cutting their lawn because they are not able to do it themselves
  • Teaching them how to set up their smartphone and conduct video calls with loved ones
  • Chatting with them from time to time on video calls
  • Stopping by to chat, play games, or even join them in watching their favorite TV show
  • Installing grab bars in their home or taking other actions to make it more accommodating to their needs

There are many, many more things that would qualify one as a family caregiver, but hopefully you get the idea.

Several years ago, we made a short video with a tongue in cheek listing of caregiving activities. Our intentions were two: getting people to think more broadly about what might make them a family caregiver and bringing a smile to family caregivers and (hopefully) brightening their day.

See what you think:

We hope you liked it and that it made you think a little.

Why it’s Important to Realize You’re a Family Caregiver

First — THANK YOU for being a caregiver!

It is fulfilling to know you are making a difference to the life of an older loved one, but can also present challenges to your own life.

Many family caregivers have jobs, businesses, or school from which caregiving takes them away.

Others find themselves in a caregiving sandwich, also providing care to their children or grandchildren.

Often caregivers encounter financial challenges due to helping loved ones financially and/or reductions in income because of time spent providing care.

Family caregivers of all ages prioritize their own health below providing care, even while prodding their seniors to attend to their own healthcare needs.

It’s important that family caregivers set aside time to address their own needs, if not for themselves, then to be able to continue putting all they want into continuing to care for loved ones.

First, though, it is important to realize you ARE a family caregiver and recognize the potential impacts providing care is having on you.

What Does a Family Caregiver Look Like?

Many of you may look at yourselves in the mirror but don’t see a “family caregiver” looking back. You are just a family member doing what you think is right.

After all, you don’t look like a family caregiver, right?

But just what does a caregiver look like?

The truth is that anyone could see a family caregiver staring back at them in the mirror. Caregiving knows no demographic bounds.

You’re not too young, too old, or too anything to make a difference in the life of a senior loved one.

As Mother Teresa once said, “it is not the magnitude of our actions but the amount of love that is put into them that matters.”