The Critical Role of Caregivers, and What they Need from Us

Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.

For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.

Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.

Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.

Respite is Essential, but lacking

The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?

Changes in the workplace

More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.

As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.

Accessible resources

Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.

Money

The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.

Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.

The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.

Drive for Excellence in Social Work with Older people – Launch of College ‘White Paper’

old-people-rock

Proposals for delivering excellent social work to older people was recently unveiled by The College of Social Work (TCSW) with the launch of its ‘white paper’ Excellent social work with older people: a discussion paper.

The document kicks off a debate about what excellence in social work means and how it could make a difference to older people. Led by The College’s Adults’ Facultuy; user groups, older people, their families, carers and social workers, will be consulted on the proposals which call for:

  • employers of social workers to make it clear to older people in their communities how social work can support them and how they can access services
  • commissioners, employers, and the wider social work professions to recognise social work with older people as a specialist area of practice
  • clarification and strengthening of the role of social workers in policy and guidance relevant to older people
  • research evidence to be properly utilised to ensure social work with older people continues to evolve and improve
  • the lived experiences of older people to be central to the continued improvement of this area of social work practice.

Feedback from the consultation will go towards a final document detailing the capabilities and conditions required for excellent social work with older people.  Initial findings will be released at TCSW conference in March this year, followed by publication of final reports in May.

Bernard Walker, Chair of the Adults’ Faculty said:

“Our aim is to create the right conditions and opportunities for social workers to improve the lives of older people by ensuring they receive excellent social work.

“We know there are pockets of excellent practice out there; we have seen the difference it makes to individuals, families and communities, and how it improves the use of resources.  We want this to become the norm for all older people no matter where they live.

“Our paper sets out our initial thoughts on what needs to be done, but we want the views of  the people that count, so we can agree on the capabilities and conditions needed to provide excellent social work for older people.

“Their responses will go towards our final document which we’ll use as our call to action for social workers, commissioners and stakeholders to ensure excellent social work for older people.”

Feedback can also be sent to The College via email; or views can be lodged by taking part in a short online survey. Email Michael.simpson@tcsw.org.uk with responses to the following questions:

  • How should we define excellence in terms of social work with older people?
  • What difference do you think excellent social work can make?
  • How can social work with older people be better recognised and valued?

Or take part in one of the following short surveys:

  • For older people, their carers and families:
  • For social workers, managers and employers:

The College of Social Work is the centre of excellence for social work, upholding and strengthening professional standards to the benefit of the public. We are an independent membership organisation that aims to provide a strong, unified voice for social workers and play a leading role in the development of social policy.

Media contacts

Michelle Smith – Michelle.Smith@tcsw.org.uk  t: 0208 4532 932, m: 07714 245785

Cathie Louis | Senior Communications Officer | The College of Social Work

020 8453 2924 | www.tcsw.org.uk | 30 Euston Square, London, NW1 2FB.

Press Release: Social Work Helper Magazine was not involved in the creation of this content.

The Care Act 2014 and What it Means for Prisoners in the UK

elderly-prison-warden

The British prison service is struggling to deal with an ageing and growing population. As it stands, the number of prisoners in the United Kingdom has increased by 20% in the last 12 years, and is now fast approaching 85,000. Higher crime rates combined with longer sentences mean that many inmates are reaching old age in prison, leaving the system struggling to cope with the demands placed on them.

The Break Down

The Care Act 2014 is due to be implemented in April 2015. This Act is a revolutionary piece of legislation because for the first time, it outlines practices for the care of prisoners. As the Minister of Care and Support, Norman Lamb states: ‘The Care Act has created a single, modern law that makes it clear what kind of care people should expect… First and foremost councils will now have a duty to consider the physical, mental and emotional wellbeing of the individual needing care.’

This new legislation will affect not only the prison service but local authorities across the country. As of next year, social care needs in the UK prison system will be assessed on a case by case basis. Prisoners who meet a set of criteria and are deemed to require extra support will have services provided by their local authority, rather than by individuals employed by the prison service. For the first time, the prison service and local authorities will work in conjunction to share a legal duty of care.

Staffing and Training Issues

With 13% of prison inhabitants situated in the 50 plus threshold, this Act could put further strain on the British prison service and its staff. Therefore, in order to comply with this Act as well as cope with these growing care responsibilities, prison staff will require professional training to deal with these extra demands. Courses including palliative care, health and safety, and dementia awareness could soon become a standard part of a prison officer’s training. But there are limitations on the care duties that a single member of staff can be reasonably expected to perform. For example, those inmates who have been diagnosed with Alzheimer’s, are disabled, or incontinent, call for a higher provision of care and require a larger allocation of a prison officer’s time.

This Act will come into effect during a turbulent economic period for the National Offender Management Service (NOMS). Having already experienced huge financial cuts over the last few years, NOMS in currently expected to shave a further £150 million. The prison service does not have the financial budget or levels of staffing that would be required to provide one-to-one care for each prisoner. Given their expected cut back, the reality of being able to viably fund new staff and provide training is a tall order. Yet for the safety and welfare of the general public, these inmates cannot be released back into society purely on account of their age and care needs. Perhaps an appropriate solution would be to create an alternative establishment: by providing a secure facility solely for elderly offenders, a smaller number of staff would require additional training. It would also free up essential space in a prison system that is growing at an exponential rate.

Essentially, The Care Act will now require the UK prison service to provide social care in conjunction with the health care provided by the NHS. The provision of adequate training required by this statute will cause a large strain on an already financially burdened system. The prison system will need to implement core structural modifications, as well as training and staffing changes, in order to provide and cope with this additional social care role.

Photo Credit: Courtesy of ToledoBlade

Stages of Development: Aging Across the Life Span

 

Working in a legislative office, I’ve come to learn that people are always at least 20 steps in advance of the institutions of learning, government, healthcare, and other providers whom we turn to for help and leadership.  As a result, much of what we are taught is the way things were and not the way things are.

This phenomenon is nowhere better illustrated than in the case of Erikson’s Stages of Development in his lifespan theory.  From the day I walked into my first casework class in social work school, I realized that the prevailing academic view of the lifespan after adolescence was out of sync with reality.

Remember these last three life stages from Erikson’s 8 stages of development?

6.  intimacy vs. isolation, ages 21-40  (Adulthood Stage I)

7.  generativity vs. stagnation, ages 40-65 (Adulthood Stage II)

8.  ego integrity vs. despair, ages 65+ (Senior)

When I look at this, my first reaction is “oh my, it looks like 65 is the end of life.”

As I age and I would now be considered a “senior”, I have come to realize that the stages along the lifespan are not fixed. No, rather it is a process that is ever-changing, fluid, and flexible. Mixed into this process is the huge diversity of human experience and culture that characterize the elder generation.

Recently, I have become aware that there is a new stage of life, not yet considered or noticed by the keepers of knowledge.  Those of us who are somewhere between 60 and 80 are often a broad and flexible age group that tends to be difficult to generalize. Therefore, no real place in society.

Just as adolescence as a developmental transition between childhood and adulthood was not always considered a life stage, so the “older boomers” or the “young old” are now in that same state of irrelevance in our culture. Nobody, including ourselves, knows what to call us. It seems to me that we are in our own developmental transition between adulthood and seniorhood.

Before psychologist G. Stanley Hall (1844-1924) coined the term adolescence and studied it as a distinct developmental period, our society considered adolescence a luxury.  It is reported that perhaps the real reason there arose the developmental period of adolescence was to delay young people from going into the workforce, due to the scarcity of jobs.

Today, we the “young old”, are being pushed out of the workforce.  Could it be for the same reason? When we leave our career jobs, whether by choice or not, we step into a void, a world that has left no space for us.  We are truly the invisible generation, searching for an identity.  People start offering us seats on the bus, but many of us are not ready to sit down.  We are too old by some standards and too young by others.  What we are searching for is a way to remain relevant in today’s world.  A friend said to me recently, “I don’t mind getting old, but I do mind becoming irrelevant.”

If one looks at the new longevity statistics, one might come to the conclusion that these extra years are just added on to the end of our lives.  Yet, that is not at all what is happening.  What has happened is a whole new stage of life has opened up.  No longer are 65 year olds edging toward the end of their lives.  If they are relatively healthy, they actually have a long way to go.  And, they are not going to Florida to play golf and bingo.

So maybe it’s time to rethink the stages along the human lifespan.  Just as young people are taking longer to enter adulthood, those of us in the over 65 category are taking longer to enter seniorhood.  Maybe those young adults need to create a new life stage for themselves just as we, the old boomers, are creating our own new stage of life.

Now, what we need is for society to accept it?

A Call for Radical Aging

ageing

In the 60’s, we raised our voices to put an end to racism, sexism, and to end a war.  Now, we are in our 60’s and we need to dig down deep to raise those voices again to put an end to ageism.

If there is any certainty in this world, it is that we are all journeying in the same direction.  We are all going to age, we are all going to, hopefully, get old, and we are all going to die.  How we age and how we prepare for the last part of our life’s journey will be shaped in great part by the society we live in.

Do we want to take that journey in an ageist society?  As women, do we want to remain invisible, spending time and money trying to erase the signs of old age and wisdom from our faces and bodies while hoping someone will see us and/or hear us?  As men, do we want to cling to myths of virility and strength, trying to deny the inevitable? Or, do we want to be respected, even revered, for lives lived and the knowledge and experience that comes with actively living through the many challenges we’ve faced?

As boomers and seniors, we have an obligation, a duty, to make our voices heard, speaking up for and molding the kind of society that will not see us as the “other”.  Many of us raised our voices in the 60’s to help create the civil rights movement, the anti-(Viet Nam) war movement, and the women’s rights movement.  Now, we are in our 60’s, and we need to dig deep down to re-energize those voices today to create a Radical Aging movement.

Longevity is here.  It’s everywhere.  It permeates the media, in professional journals, memoirs, movies and theatre, you name it.  More of us are going to live to be older than ever before in history, and our children and grandchildren even older. The effects of longevity are tenfold, affecting our health care choices, our work environments, and our relationships within families.  You may have already bumped into the challenges of longevity as caregivers of your aging parents who are in their 80’s, 90’s and 100’s. If you haven’t been there yet, it will, I can assure you, be one of the truly life-impacting eye openers that you experience on your life’s journey.  It is a front row seat view into a future that needs a movement to change it.

We are a generation that has lived through great societal changes, some good and some not-so-good.  Some of the positive changes still need refining, but there is no doubt that we made them happen.  Some I mentioned above; civil rights and women’s rights, and more recently, gay rights.  Our lives have been influenced and molded by constantly evolving technological innovations; we have new ways of communicating through social media.  We Skype or have facetime with our families who are more often separated by greater and greater distance.  We’ve moved from an insular world into a connected world.  Once only talked about, we can now see, often in real time, how what we do in our personal lives impacts other lives, not just in our own communities but on a world-wide level.  Medical research and the attending technology have contributed to the unprecedented length of life, and this is presenting challenges that are only first being addressed.  On every level and in every walk of society we are finding choices that were never available before.  We spend a lot of time trying to determine what is available to us and what we really want.

Yet, as we celebrate longevity, we stigmatize growing older.

It is time to change the accepted language of aging. All the descriptive aging stereotypes that pervade our culture and collective conscience need to become non-p.c.   We are so much more than boomers, seniors, senior citizens, aged, ancient, crones, oldsters, codgers, golden agers, geezers, old-timers, grannies…and here’s on I just came across…coffin dodgers.  Any of these sound like compliments?  We live in a culture of age and death deniers.  Putting old people “out to pasture” is no longer an acceptable metaphor.  Neither is putting them out to the golf course, shuffleboard, nor bingo.

As we age we become more and more diverse.  The longer we live, the more opportunity we have to be shaped by our life experiences which render us more dissimilar than alike.  One size does not fit all.  There is diversity in how we age biologically, physically, intellectually, emotionally, and spiritually.  We bring “value added” to society.  Yet, in a culture of ageism and denial, to be recognized for that “value added” is an uphill struggle, and it is time for us to take up the struggle.  We proved in the past that we can effect change, and we are just going to have to dust off those banners and slogans, put on our most comfortable walking shoes and get out there again.

I leave you with this anecdote from my own experience:  I’m 60 years old and sitting in a class on public policy for the aging.  Next to me is this very sweet 20-something young woman, arduously taking notes and following the instructor’s every word.  After hearing the statistics on senior health issues and senior poverty, she turns to me and says, “I’m never going to get old.”  My response is, “I really do hope that you will.

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