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Resilience and caring for someone with dementia

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Creative commons license miz_ginevera https://www.flickr.com/photos/ginevra/4603670503

Creative commons license miz_ginevera https://www.flickr.com/photos/ginevra/4603670503

Resilience is the ability to bounce back from a tough situation.  Most of us are pretty resilient. That doesn’t mean we don’t experience stress, sadness, anxiety and a host of other emotions when something bad happens, but over time we adapt.  This is particularly important when we’re faced with a situation that will continue for some time, such as caring for a loved one with dementia.

Someone is resilient if they show no obvious sign of distress in the face of a significant challenge (such as caregiving); continue to actively engage in life; and see their life as positive, full of meaning, and satisfaction.

The good news is that resilience is something that we can learn and foster in ourselves and others.  This is one takeaway from a recent article in Aging & Mental Health that examines resilience in individuals caring for a spouse with dementia.

The authors interviewed 13 women and 7 men who were caring for a spouse with dementia.  They identified eight of these caregivers as resilient although caregivers in general had both resilient and non-resilient characteristics.

Similar to research I discussed in my last post, resilient caregivers were able to maintain continuity with their previous life, stayed positive, and frequently relied on humor in their approach to life and their interactions with their loved one.  They tended to use the experience of caregiving as an opportunity to learn about dementia and develop new caregiving skills.  Having more disposable income was helpful because it contributed to a better quality of life overall, but money alone wasn’t enough to foster resilience.

Most important to me, caregivers fostered resilience through their interactions with community and societal resources.  This included support from family and friends as well as broader social participation.

For example, participation in dementia support groups and the friends made through those connections were particularly important because of the ability to share experiences and expertise with others who understand what they are going through.

Resilient caregivers were more likely to recognize their own limitations.  When they needed a break, resilient caregivers took advantage of day care, respite care, and home help.  In fact, the use of respite care was an important factor distinguishing resilient from non-resilient caregivers.  Caregivers who didn’t use respite care said they unaware of the service, did not know how to access it, or did not feel like they were ready to use it.

This suggests to me that health and social service professionals who interact with caregivers can do a better job of educating them about the availability of these services, how they can access it, and the importance of using these types of support services early, before they are burned out.

Next week I’ll share some useful resources for caregivers and how to find them in your community.

In the meantime, what supports have helped you stay resilient as a caregiver?

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Caregiving and dementia Part 1

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Couples and Ponds by jennie-o available under Public License

Couples and Ponds by jennie-o available under Public License

All caregiving is stressful. After all, you are directly impacting the life of a loved one, often in very personal and intimate ways.

About 44 million people worldwide have dementia. By the year 2050 it is expected to be 135 million.

Caring for a person with Alzheimer’s Disease or other dementia can be particularly difficult because of the progressive nature of the disease and the effect it has on the individual’s personality and ability to communicate. People with dementia are less able to do basic self care tasks than those with other illnesses, particularly in the later stages of the disease.  In addition, caregiving for Alzheimer’s Disease tends to last longer ranging from 4 to 20 years compared to an average of 4.6 years for all conditions.

Compared to other patients, people with dementia have on average more days of contact with the health care system, use hospital and skilled nursing facility services more often, have more inpatient days, and see more clinicians per year. People with dementia have an increased risk of adverse drug events because of the number of medications they take and are at greater risk of being prescribed an inappropriate medication.  In 2012, one in four people with dementia or multiple chronic illnesses were exposed to at least one high-risk medication.  Caregivers are usually responsible for managing these visits, making sure the bills are paid, and keeping track of medication as well as all the other aspects of care.

In the U.S., an estimated 15 million families provide care to people with dementia.  Dementia caregivers spend more time in caregiving, have more care responsibilities, and report more financial burden and emotional distress than caregivers of older adults without cognitive impairment.

According to the Alzheimer’s Association, only 6% of caregivers for a person with Alzheimer’s are spouses. Most are children. This makes sense. Women live longer and are, therefore, more likely to develop Alzheimer’s or other dementia and are also more likely to be widowed leaving a child (usually a daughter) as her primary caregiver.  Or if the spouse is still alive, they are likely to need care themselves.

While many of the caregiving issues are the same, caring for a spouse versus a parent carries unique challenges because of the nature of the relationship.  One recent paper by researchers at Lancaster University in England discusses the results from ten qualitative studies published between 2004 and 2013 that examined the impact of dementia on couples’ relationships.

They identify several themes across these studies.

Couples worked to keep a shared identity as a couple. Dementia was something external to the couple even though one person had the illness.

Coping involved teamwork and an ability to adjust to shifting roles and responsibilities as the dementia progressed. Some couples planned the transition while for others it was a more organic process.  Shifting roles led to different power dynamics which also influenced each partner’s  identity. Some spouses embraced the new responsibilities, others felt them only as a burden.

Partners were attuned to how changes impacted the other. The spouse with dementia wanted to protect their partner and avoid burdening them. The caregiver wanted to protect their spouse’s autonomy and sense of self.  In both cases, they had to change their expectations as the dementia advanced.

Couples were resilient and demonstrated that in a number of ways. For some this meant continuing with their usual activities no matter what. Others reevaluated their life together and developed strategies and adjustments to make the most of their remaining time together.

It seems so obvious to say that when one spouse is diagnosed with dementia the couple is affected.  Our current approaches to treatment and research, however, don’t always incorporate the couple as a unit. This paper highlights some of the reasons that is so important.

More on caregiving and dementia in upcoming posts.

In the meantime, have you or someone you know cared for a spouse with dementia? Do these themes resonate with that experience? 

Pondering the Future of Long Term Care: The Age of Dignity by Ai-Jen Poo

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ageofdignityAi-Jen Poo is the director of the National Domestic Workers Alliance (NDWA) and a co-director of Caring Across Generations.

Given these roles and her work advocating for better protections for care workers, it’s not surprising that Poo’s approach to discussing the consequences and opportunities of the elder boom is framed around the experiences of this often overlooked group within the labor force.

In The Age of Dignity: Preparing for the Elder Boom in a Changing America, Poo illustrates her points with personal stories from the caregiving experiences of her own family and those of personal care workers she has met through her advocacy work.  These stories show the dedication of the workers, the good and bad situations they find themselves in, and the skills and expertise required to do the job.

They also show how domestic work – informal and professional – is undervalued.

An estimated 2 million people work as in-home caregivers in the United States. They care for the most costly clients in our health care system, allowing them to remain at home as most would prefer.  They are first responders in a disaster and they support the families as well as the care recipient.

Most of these workers are women. About 2/3 are immigrants and about 1/2 of those are undocumented. They earn on average less than $10/hour. Few have employer-provided health insurance, pensions, or paid vacation or sick leave.  This is for work that can be rewarding, and is certainly important, but it also physically and emotionally challenging.

It’s no wonder that there is high turnover in these jobs.  And high turnover leads to poor quality care.

At the same time, home care workers are the fastest growing part of the workforce. They are a key component of our long term care system where the number of older adults is increasing and relying on informal caregivers is not sustainable.

Poo uses stories and data to put forth a compelling set of recommendations for the future all of which lead to an infrastructure for care that she calls a Care Grid.  She notes past investments we have made in infrastructure when there was a national need and the leaps in technological and social innovations that resulted – think railroads, interstate highways, electricity, the Internet.

She also looks to international examples of such an investment like Japan and Germany who are head of us in the elder boom.  Both countries instituted universal long-term care insurance that led to better care, reduced dependence on social assistance, and expanded growth of private sector long-term care services.  In Japan’s case, the system was implemented during an economic recession.

So what’s stopping us from making this investment? If we’re willing to invest in highways because we see the national benefit why do we so undervalue the people who care for our loved ones (and someday us)?

The care infrastructure (or the lack of it) has a direct impact on the quality of care provided.  And, since money seems to speak most loudly, the development of such an infrastructure is a huge economic opportunity.

But it requires investment, long-term thinking, and delayed gratification – things that seem to be in short supply right now.  And it requires valuing this kind of work – something that requires a fundamental cultural and ideological shift.

As always, I’d love to hear your caregiving stories, the good, the bad, and the ugly.

What do you think about a Care Grid?  

Advance Care Planning Part 2: Conversation starters

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Refusal_of_treatment_formMy last two posts about advance care planning  and palliative care  have struck some nerves.  I’ve heard from people who have successfully had these conversations and, more frequently, from people who don’t know how to begin.  So, this week I thought I’d share some thoughts about starting the discussion with your loved ones.

You start.  Many (dare I say most?) of us are worried about the end of life preferences for aging parents.  It can be tough to start the conversation if your parents don’t take the initiative.  So do the work yourself first and use your wishes to start the conversation.

It’s not a one shot deal.  This is a process, not a single conversation.  And it’s difficult.  Start before it’s needed and take it slowly.  Present the idea, share your plan, circle back around and try again.  Most of these conversations start in response to a life threatening event, but all too often that’s too late.

Know your audience.  Some people may be most comfortable with a one-on-one conversation. Others may want a family meeting.  For some that may mean just family, for others close friends or health care providers should be involved.  If you’re not sure who your loved one wants involved, ask!

Find a way in. The death of a friend or a relevant piece in the news might be a good way to start the conversation.  Ask their thoughts and see if it leads to a deeper conversation.

Agree to disagree.  Remember that you’re trying to learn about their preferences, not convince them to see things your way.  It’s okay to disagree. Ask questions and try to learn why they think the way they think. And share your thoughts and wishes honestly.

In Atul Gawande’s book Being Mortal he tells the story of a man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television. This was completely unexpected to his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise.

Work backwards.  It’s hard to think about end of life wishes in the abstract.  Once the conversation is underway, work backwards from the types of issues that might reasonably arise and what decisions would need to be made in each. Begin the Conversation has a nice advance care planning workbook that includes a variety of scenarios to get you going. The National Institute on Aging has good resources about this as well.

I’m sorry. There’s no way to make this easy. But it’s worth it.

Most people say they don’t want to be a burden to their family with difficult decisions at the end of their life and yet most haven’t done any advance care planning.

Most family disputes around elder care or end of life issues that end up in court could be avoided if wishes were clearly documented in advance.

Most people say it’s important to put their wishes in writing, but very few actually have.

Do you have other suggestions for having this conversation?  Or stories about experiences where an advance care plan made a big difference?  Please share.

Advance care planning

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A version of this post first appeared at https://www.seniorly.com/.

tracksLast week I wrote about understanding individuals’ wishes as a means of providing culturally sensitive palliative care.  That assumes the individual in question knows their wishes and can communicate them or has someone who can communicate for them.

Advance care planning is one way to increase the odds that your wishes will be honored.

Be forewarned – there are forms involved.  They can make it looks as simple as checking some boxes, finding a witness or two, and signing your name.

In reality, of course, there is a lot of thinking and some difficult conversations that need to happen first.  You are, after all, giving someone the legal ability to make medical decisions for you if you aren’t able to.  That could be anything from releasing medical records to removing life-sustaining treatments.

It’s daunting and when you’re in reasonably good health, it’s tempting to put it off.  In fact, most of us do.  Only a small proportion of people have some sort of documentation about their care preferences with the numbers, not surprisingly, increasing dramatically among people who are clearly facing the end of life.

And yet, there is research evidence that patients with some form of advance directive are more likely to have the care they want at the end of life.  Even more compelling, those with specific, clear documentation of their wishes have a better quality of life in the week before they die than those who don’t.

The documents – advance directives, living wills, durable power of attorney, do-not-resuscitate order, Physician Orders for Life-Sustaining Treatment – are all just mechanisms for communicating your wishes.  Advance Care Planning  is the process to get you there.  It’s how you learn about what types of decisions might be needed, figure out what you want in relation to those decisions, and share them with your family and health care providers.  It’s how you figure out and share your values and wishes related to end-of-life-care.

This isn’t easy and it’s not something you do once and never look at again.  Your wishes are likely to change over time and may be different as your circumstances change.  You’ll need to revisit the process and update the documentation. There are lots of resources out there to help you get started. The National Institute on Aging is a good place to start.

Have you done advance care planning?  I’d love to hear about your experiences.

Dying well in a multicultural society

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sick womanWhat is a good death?  I imagine if I asked ten people this question I’d get ten different answers.  But depending on the cultural context, there are still likely to be common themes.

In an individualistic society like the United States, where personal autonomy is important, a good death is one where we can make our own choices about our final days.

Palliative care focuses on relieving symptoms and improving patient and family quality of life either with or in place of life-extending treatments.  Current approaches to palliative care are largely creatures of the US individualistic cultural context.

What happens when that individualistic society becomes increasingly multicultural?

Racial and ethnic minorities use less palliative care than whites, especially hospice care.   The reasons for this are not clear, but there is some evidence that knowledge, cultural beliefs, and treatment preferences are contributing factors.

Dying well in some cultures may be less about autonomy and more about . . . well, other things.

The US is becoming increasingly diverse (a good thing in my opinion).  If our approaches to palliative care are going to be patient-centered and effective for a wide range of patients we need to learn to communicate transparently with patients and families about care preferences and account for spiritual, religious, familial, and ethnic variation.

What are your thoughts about palliative care? 

Stuck in the middle with you . . . and you . . . and you

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I’ve talked about caregiving for older adults in earlier posts, most recently on profiles of different types of caregivers.  But of course elder care doesn’t happen in a vacuum separate from other social obligations.

sandwichThe sandwich generation – people who care for children and older adults at the same time –  knows this well.

According to a recent study using data from the American Time Use Survey, almost one third of people in the US provide some form of informal care.

Three percent of those are in the sandwich generation. They spend close to three hours a day on average in providing care. Most of that time is spent by women and most of it is spent on childcare.

Of course these are averages. They dilute the reality for those in the thick of it who may be helping an aging parent, sick spouse, or child with a disability for eight or more hours a day.

But they do allow us to make some projections about what lies ahead.

No one should be surprised that the gap between time spent providing care and the amount of care needed is growing.

Assuming everyone keeps doing what they’re doing, we’ll need about 1.3 million more care workers – home health aides, childcare workers, and personal care aides by 2050.  That’s a 50% increase which doesn’t seem impossible given we’ve got several decades to do it.

It does, however, require some planning and investment in the future rather than short-term gains – something that seems to be in short supply right now.

Workforce development is important, but this post is about informal care.  Policies like nationally subsidized universal childcare and elder care, flexible work schedules, and medical leave programs for informal caregivers would be helpful.

They would give households more choice about who works in what kinds of jobs and how much.  They could give people more freedom to take some risks, maybe start a new business, or try something really innovative.  These kinds of policies help families and the rest of us too.

I’m sure you have noticed that there is a presidential election this year.  Support for informal caregivers may not be a hot topic in debates and television ads, but it does come up indirectly in discussions of health care, jobs, and living wages.

Maybe it be should be discussed more directly as well.

What policies and programs would you like to see for informal caregivers?

A Primer on Long-Term Care in the United States

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And a question:  What more would you like to know?

In 2012, the CDC and the National Center for Health administered the first wave of the National Study of Long-Term Care Providers.  The data include information on supply, organization, staffing, and services provided in adult day services centers, hospice, nursing homes, and residential care communities as well as demographics, health, and functional limitations of users. Most of the numbers in this post come from the 2013 report of this data.

What is long-term care?

Long-term care covers a broad range of services.  It can be health care, personal care (such as help with bathing or dressing), and supportive services (such as counseling or case management).  These services can be provided in the home, in the community, or in a residential setting and they can include paid services as well as unpaid care from family or friends.  Most long-term care services are used by adults aged 65 and over.

Over two-thirds of us who reach age 65 will probably need some kind of long-term care services during our lifetime.

LTC providersIn 2012, about 58,500 paid and regulated long-term care services providers served about 8 million people in the United States. The majority of providers were residential care communities (such as assisted living), nursing homes, or home health agencies.  The vast majority of these are located in metropolitan areas and most long-term care providers in the U.S. are for-profit.

Long-term care providers employ registered nurses, licensed practical or vocational nurses, aides (ranging from certified nursing assistants and home health aides to medication technicians), and social workers.

Most hospices employed at least one social worker.  Three-quarters of nursing homes employed a social worker and just under half of adult day services centers and home health agencies had social workers on staff.  Only 14% of residential care communities employed a social worker.  Social workers, however, spend the least amount of time with clients compared to other professionals.  Aides spend the most amount of time.

Most providers do provide social work services, at least by referral if not directly.  Other services include mental health or counseling services, therapeutic services, and skilled nursing or other nursing services.  Nursing homes and residential care communities have pharmacy services as well as hospice services of their own.

Who uses long-term care?

enrollment in LTCOn any given day in 2012, the majority of people using long-term care were receiving home health care.

Most users of long-term care are over 65.  Residential care communities, nursing homes, and hospices serve more people who are 85 and older than home health or adult day services centers.

Most users are women and non-Hispanic White.  Adult day services centers are the most diverse with 47.3% non-Hispanic White, 20.2% Hispanic, 16.8% non-Hispanic Black, and 15.7% non-Hispanic other.

Just under half of nursing home residents have Alzheimer’s disease or depression.  Alzheimer’s was least prevalent in home health (30.1%) and adult day services centers (31.9%).  Depression was least prevalent in hospice (22.2%), adult day services centers (23.5%), and residential care communities (24.8%).

The majority of home health patients and residents in nursing homes need help with activities of daily living such as bathing, dressing, toileting, and eating, but adult day service centers and residential care communities have clients who need these services as well.

This is just a snapshot to give you a lay of the land.

Let me know what other things you’d like to know about long-term care.

The Long and Winding Road . . .

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. . . to universal health care coverage.winding road

In 2015, the Affordable Care Act provided health coverage for over 11 million people who were previously uninsured.  Despite this apparent success, the Affordable Care Act’s future is uncertain. Whether or not opponents will truly be able to overturn the ACA at some future point, it’s clear that they will continue to put up roadblocks wherever possible.

Bernie Sanders would like to move from the ACA to a single-payer system like Medicare for everyone.  I love lots of things about Bernie Sanders, but this makes me cringe.  Not because I wouldn’t love to see a single-payer system in the U.S. some day – I would – but because it is so clearly unrealistic right now.

But why?  Why did we end up with such massive health care inequalities while other industrialized, democratic countries have universal coverage?  What might have been different in the U.S. today if a different thread or two had been pulled?

A recent article by Dr. Jesse Bump from the Harvard School of Public Health provides some insight.

He looks at the historical context for the development of universal health care in Germany and the UK with the US and its continuing resistance to universal health care as a comparison case. Finland is my ongoing point of comparison and is frequently held up as the poster child for education, family leave policies, and other social programs.  We can learn a lot from Finland.  But it’s a relatively young country in its current configuration (Finland declared independence from the Soviet Union in 1917).

Germany and the UK are more similar to the U.S. historically and culturally.  Each country faced many of the same forces during these times when they moved to universal health care or it was up for discussion – industrialization, the growing economic importance of industrial workers, and the significance of unions. Social upheaval is often a window of opportunity for big change.  In Germany and the UK the result was universal health care, but not in the US.

It wasn’t because the mechanisms for financing and delivering care were different.  Those systems came before decisions about health care expansion and remained basically unchanged after the move to universal health care in Germany and the UK and were were adapted rather than refashioned.

It wasn’t because it was more politicized in the US.  In fact, discussions around universal health care were highly political in all three countries.  That’s not surprising because it involved issues of rights to benefits, responsibilities to pay, and redistributing resources.

Nope. The bottom line was people.  The governments in Germany and the UK expanded social protections because the citizens demanded it.  In the US, workers were suspicious of compulsory health coverage and didn’t want to pay for services they weren’t going to use.  So instead of universal health care there were incremental expansions to Medicare and Medicaid in the 1960s, other attempts at change along the way, and the ACA in 2010.  In this light, it seems that the path in the US toward greater social protection is slower, but maybe not completely derailed. And if we, as the citizens want further expansion, we need to make more noise and vote accordingly.

I’d love to hear your experiences with the ACA or other health care coverage and access experiences from the US and around the world.  That’s bad and good experiences – really, I mean it!  

What do you think people should know? What questions do you have? What would you like to learn more about?