Tuesday, 2 December 2014

Destination without Journey

‘I will take my life at noon today. It's time'. 

Gillian Bennett was 83 on the summer day in 2014 when she took her own life. The setting was idyllic: a short walk from her house on Bowen Island, made harder and longer by the foam mattress she had to drag without help to her favourite spot, a grassy perch with a stunning view. Had her husband Johnathan assisted her in any way, he would be breaking the law.

Around noon, Ms. Bennett followed a drop of Whisky with a mixture of Nembutal and water and said goodbye. The website www.deadatnoon.com was made public following her death and provides a thorough and thought provoking explanation of the reasons she chose to end her life. By sharing her story Ms. Bennett intended to stoke public discourse on the highly controversial issue of physician assisted suicide.

Ms. Bennett had dementia and it was progressing--rapidly. A psychotherapist by profession, she knew very well that her lucid moments would continue to be fewer and farther between until she would no longer know who she was. She understood that eventually 24 hour care would be required and that her “empty carcass” would become an increasing and needless financial burden on her family and on the provincial health care system until her death. 

Acting precipitously while still lucid was necessary because Ms. Bennett needed the wherewithal to act without assistance. Canadian law in August 2014 forbade health care professionals or anyone else from assisting her in any way. Interestingly, the public discourse she intended to spur by going public with such an intimate act has currently dovetailed with a Canadian Supreme Court hearing of an appeal by the B.C. Liberties Association contending that the law violates the Charter of Rights and Freedoms.

In many respects, Ms. Bennett’s actions appear laudable and courageous. She was open and transparent about discussing her intentions with family and close friends and accurately cited numerous humbling, degenerative symptoms consistent with advanced stages of dementia. She couldn’t countenance family members feeling obliged to pay regular visits to a nursing home or long term care facility to visit someone who not only had no idea who they were, but no idea who she was either.

If you’ve been around dementia, you are familiar with the effects of memory loss, long, blank stares, repetition, incoherent or unintelligible phrases, ticks, twitches, agitated, erratic behaviour and a host of increasingly debilitating physical deficits or infirmities. You may be aware that dementia is a terminal disease that most often takes lives as a result of falls or aspirated pneumonia. To date, there is no cure and little to slow the rate of neurological degeneration.

For all these reasons, Ms. Bennett’s decision is clearly supportable and perhaps even noble. Were there a public plebiscite on whether Canadian law should offer the choice of physician assisted suicide to dementia sufferers (and those suffering from terminal disease), it is likely the majority would vote in favour. After all, it is merely choice that Ms. Bennett is advocating. Not everyone with dementia or a chronic, debilitating terminal illness such as ALS will opt for assisted suicide, nor would every physician agree to administer it. In fact, it is thought the Supreme Court will overturn its 1993 ruling (which by a 5 to 4 vote denied a similar challenge by Sue Rodriguez) and endorse physician assisted suicide under rigorously regulated conditions. But while there is no question that quality of life considerations are fundamental to any discussion of assisted suicide, how can it actually be measured?

If quality of life is assessed solely according to normal physical and cognitive functioning, one could certainly deduce that symptoms such as incontinence and memory loss would significantly erode it. But dementia is not normal and behaviour cannot reliably be tied to predictable and familiar triggers or biological factors. Because there is a tendency to track dementia as a deficit trajectory, non-verbal communication is commonly considered a typical mid to late stage inevitability. And yet, dementia is, not surprisingly, allied with depression. Is it conceivable then, that non-verbal communication may, in some cases, be a choice rather than a strictly neurological outcome?  And if that is feasible, how reliably can a normal brain accurately assess the potential quality of life available in dementia?

Imagine a 94 year old man curled up all day long in a wheelchair, hands pressed against his chest, eyes cast downward. He speaks seldom, rarely opens his eyes and looks stiff and lifeless. How to account for the fact that this man, this lover of music, who back in the day would delight his children by breaking into song and dance with little provocation, can now, after years of assuming the same rigid position day after day, suddenly spring to life because someone thinks to place headphones over his ears and click the play button on an Ipod? Instantly, his eyes pop open, bugging out of his head with a mix of surprise, excitement and unbridled joy. He is animated, dancing, face alight, rocking from side to side, virtually bouncing around in the chair. Where has this come from? Where has he been for so long when he could have been here? 

The man is shocked and disappointed when the headphones are removed, but once reassured they will soon be replaced, he clearly and enthusiastically blurts out ‘Cab Calloway’ when asked to name his favourite musician. This begins an energetic  exchange, demonstrating that the liveliness lingers; that it can survive the absence of the music, but more importantly, in order to have been elicited, it must have been merely dormant all along.

Now imagine an 89 year old woman in long term care, virtually welded into the armchair she needs for security and communication. Head down, chin anchored to her chest, her eyes are squeezed shut, perhaps to hide from a world she no longer feels part of. Her fists are clenched, but she uses the right one for communication, banging on the wooden armrest at different rhythms and intensity to express what is rarely understood. She has been non-verbal for a number of years, able (or willing) only to grunt since the ability to form words seems to have abandoned her.
There is a white haired woman, a therapist, leaning over the 89 year old, perhaps a foot from her face. Her reassuring voice, brimming with praise, tells the woman how wonderful, beautiful and beloved she is. She strokes the woman’s face, gently, lovingly, and as she sings a hymn, the seated woman appears to respond, grunting and matching rhythms with her fist on the armrest. The white haired woman draws nearer, her warm breath and soft words soothing, trustworthy, comforting. The seated woman, eyes still shut, tilts her face up toward the therapist until they are inches apart, the grunting and fist pounding now silent. Barely above a whisper, the white haired woman says, ‘open your eyes’. Shockingly, the other complies. Now the therapist sings ‘Jesus loves me yes I know…’ and the seated woman, the hint of a smile creasing her lips, stares up at her  and in a dry, raspy voice, sings ‘for the bible tells me so.’

Is it possible that our understanding of the quality of life experienced by someone with dementia is hampered by a lack of imagination? Is it a stretch to imagine someone electing silence to cope with the incredible frustration and grief arising from the inability to clearly express one’s sense of displacement and loss?

There is no compensation for memory loss or diminished physical function, no illusion about the devastating and traumatic burden imposed by dementia. Gillian Bennett understood this and chose what she considered a dignified, self-affirming alternative. Intriguingly, what the anecdotes above suggest is that even while neural pathways linking the present with the past are no longer navigable, with the right stimulus, the vital touch points they inter-connected may, in some, and possibly many cases, still exist. In the mysterious realm of dementia then, assumptions about quality of life should perhaps consider the possibility that, to invert an old axiom, it may be more about the destination than the journey.  

Tuesday, 11 November 2014

Caring for the Carer: A Program for Caregivers of People with Dementia

Six years ago, Sylwia Halas had a decision to make. Her 62 year old mother had been diagnosed with dementia two years previously, lived four hours away and had recently lost her spouse. It was neither practical nor safe for her mother to live alone.

Difficult decisions usually emerge from a struggle between intuition and logic. We assume most conscious decisions are made by analyzing a problem and choosing a rational solution. Intuition however, operates far more nimbly than does logic and may, in fact, drive the majority of personal decisions we make each day.

In Ms. Halas’ case, representing logic was a limited view of what was in front of her at a relatively early stage of her mother’s illness. To predict what was to follow, or the toll it might take, would require knowledge and experience she hadn’t yet acquired. Intuitively, a mother-child relationship spanning four decades powerfully stoked the primal need to fulfill her filial duty: to give back. Still, when Ms. Halas and her spouse chose to take her mother into their home, there was no hint of irony, no clue that the very driver behind the decision to provide care—the relationship—was to become its most prominent casualty.

Dr. Joel Sadavoy, a geriatric psychiatrist, is Director of the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training at Toronto’s Mount Sinai Hospital. In 2009, the Centre launched the CARERS Program (Coaching, Advocacy, Respite, Education, Relationship and Simulation), a series of interactive workshops designed to address the needs of family caregivers providing care at home to individuals with dementia.
“It was clear when we started,” says Dr. Sadavoy, “that dementia is a unique illness…that produces a need for gradually increasing physical care, but takes out of the relationship the very fabric that created the relationship in the first place.”

What is it like for an adult child, having accumulated decades of shared, experiential markers, a vast network of emotional touch points connecting parent and child, when slowly, or suddenly, these relational anchors lose their purchase? “I think that adds a huge layer of complexity,” explains Ms. Halas. “You are striving to sustain a relationship that doesn’t exist anymore. My mom has lost her ability to communicate. None of the customary rewards are available from a person who is no longer who they used to be for you.”

Unfortunately, in many cases, particularly those involving adult children caring for parents with dementia, theirs is not the only relationship in jeopardy. Early on, a psychogeriatrician had warned Ms. Halas that her primary responsibility was to her family. “You think, yes of course,” she says, “but find over time that you do put your parent ahead of the family as you try to keep up with a disease that consumes you and ultimately, dramatically changes your relationship with your spouse and children.”

Ms. Halas came to a point where she felt she was losing control. Her spouse complained she was no longer there for her family, too busy planning several days ahead to inhabit the moment. She felt helpless. “You argue with your spouse and yell at your kids, then your spouse yells at you for yelling at the kids and you realize this can’t go on.”

According to Dr. Sadavoy, caring for someone with a physical illness requires some degree of sacrifice by the caregiver, but there is emotional reciprocity via the ongoing relationship. In dementia, that sharing of life is destroyed by the disease. “The caregiver is not only giving of themselves,” he says, “but doing so in isolation. Dementia is an increasingly isolating disease for the caregiver, not at the beginning but it is a progressive inevitability.”

747,000 Canadians are living with dementia. That is 1 in 11 people over the age of 65, 97% of whom are estimated to have at least one caregiver, likely a family member. Alzheimer’s disease is the most common form of dementia. It was first identified by Dr. Alois Alzheimer in 1906. He cited “plaques” and “tangles” as two primary features of a disease that causes brain cells to degenerate and die, and leads to progressive changes in functioning and behaviour.

According to a 2013 paper on the CARERS program in the World Journal of Psychiatry, carers, usually spouses or adult children, ‘enter the caregiving role…with little knowledge of and few skills to deal with dementia.’ Not surprisingly, it is the behavioural and psychological symptoms that pose the greatest challenge for the caregiver, sometimes referred to as the second patient due to the enormity of the burden she or he assumes. Adding social and financial hardship to the mix further serves to impair carers’ problem-solving ability and reduce their caregiving capacity.[1]

When Dr. Sadavoy and his colleagues originally conceived the CARERS Program, intervention models had generally not taken a comprehensive view of caregiving. Other than providing some education, there was a narrow focus on practical, task-oriented activities, typical of looking after someone who is physically impaired. Given the progressive debilitation of the care recipient, in tandem with the growing isolation of the caregiver, it became evident that a complex intervention process was necessary.

Studies showed that interventions developed from cognitive behavioural theory (CBT), which aims to help people change how they think ('cognitive') and what they do ('behaviour'), appeared effective. Instead of focusing on the causes of distress in the past, it looks for ways to improve the person's current situation. Derived from CBT principles, problem-solving therapy (PST) is a structured intervention which addresses a practical goal of the program: to help caregivers learn the core skill of understanding how to put their feelings aside. This means not having to win the argument, learning how to avoid making the issue the core focus, and shifting attention instead to the comfort and need of the care recipient.
The CARERS program identified 3 pillars of need: 1) Managing the instrumental, practical, day-to-day issues such as finances, personal care and maintaining a safe environment. 2) Addressing the caregiver’s lack of skill and experience; essential because of the professional level of skill required to deal with the marked changes in personality and behaviour. 3) addressing the emotional complexity of the caregiving role. “If the emotional capacity is not present, the whole thing falls apart,” Dr. Sadavoy emphasizes. “Without the emotional strength to utilize their skills and strategies, caregivers will fail; either they will get sick, emotionally disturbed with depression or anxiety, or break down physically.”

The program is conducted as a series of 10 weekly workshops with 5 caregivers in each group. There are 2 health professionals trained as group leaders and a standardized patient whose role is to engage with each caregiver as she or he describes problematic or painful encounters with a parent or spouse. Through question and observation, the standardized patient attempts to simulate the interaction by assuming the role of the dementia patient and enacting those problematic situations with the caregiver. The group leaders provide expert coaching to help the caregiver address both practical and emotional issues inherent in their daily experiences with the care recipient.

The first 4 sessions utilize Problem Solving Therapy (PST) to help caregivers control emotions by teaching them to think in a formal, problem solving way. This is followed by 6 weeks of simulation training. Group members may then attend a monthly maintenance program which lasts for a year.
For Ms. Halas, who recently completed the 10 week workshop, the program has served a practical purpose. “You learn a lot about dementia in general and how to problem solve things you have to deal with on a daily basis.” Although she’d had difficulty discussing the effects of caregiving on her family and professional life with friends, the safety and security of the workshop provided the perfect outlet. “These are people who understand what it’s like,” she says. “They know the feeling of too much to do in one day. They don’t need any background information to talk about things there wasn’t space to talk about before.”

The practical and personal benefit Ms. Halas’ derived from the CARERS program is not unique. Results of the study published in the World Journal of Psychiatry indicate that it was generally effective in ‘improving caregiver competence, stress coping ability and mental well-being’.
Expanding the program is underway on a number of fronts. Community Care Access Centres (CCAC) coordinate and deliver regional health care services across Ontario. Problem Solving Therapy (PST) Training was provided for close to 200 Toronto Central CCAC Care Coordinators working in the home. Both clinical and statistical results of this initiative were strong in all measured parameters.

A suite of tools and a contact system have been developed to help 250 primary care physicians in Toronto deal with dementia in their practices and link them to resources to help both caregiver and care recipient.

The Federal Government has funded the Centre in support of a 5 year program to help caregivers employed in the Canadian workforce provide care at home. The Working CARERS program needed a vehicle through which to adapt the intensive, face to face therapeutic practices to the workplace. Ceridian, a provider of Employee Assistance Programs to corporate clients, has partnered with the Reitman Centre for this purpose. The CARERS program trains health care professionals hired by Ceridian to provide group interventions in the workplace using the program model. A formal research study will assess the impact of the program on workplace performance.

It is believed that the CARERS model is the first of its kind ‘to make systematic use of standardized patients trained to play the role of persons with dementia for hands-on training of informal carers…’ [2] The training of standardized patients in the simulation roles has become a separate area unto itself with the launch of a Calgary initiative using a protocol that will help create a pool of people able to perform this challenging work.

While there are drugs that may temporarily improve symptoms, there is no cure for dementia and no treatment that stops its progression. Although growth in research dollars has been tepid and pales in comparison to funding for cancer research, the tide may slowly be turning. The British government recently committed to increasing its research funding by 25% and has pledged to find a cure for dementia by 2025. Australia has earmarked an additional $200 million for dementia research over the next five years. Here at home, the Alzheimer Society of Canada is calling for a National Dementia Plan, pointing out that we lag behind countries such as the United States, France, Australia and the UK which already have plans in place.

Dementia will continue to plague mankind for years and possibly decades to come. The physical and psychological toll will cause up to 75 per cent of family caregivers to develop psychological illnesses.[3] Fortunately for Sylwia Halas, that threat has been mitigated through her participation in the CARERS program. Reflecting on the arduous journey she and her family have undertaken and the ambivalence over some of the choices made along the way, there is one decision which by virtue of hindsight, she would like to amend. “I only wish I had got into this program a year ago.”  

For more information on the CARERS Program, please select the following:

[1] Improving caregiving competence, stress coping, and mental well-being in informal dementia carers, WJP, 9/22/2013
[2] Improving caregiving competence, stress coping, and mental well-being in informal dementia carers, WJP, 9/22/2013
[3] World Alzheimer Report 2012, A public health priority. (2012). World Health Organization (WHO)

Why Family Caregiving is still not topically mainstream

In 1896, a Swedish scientist posited that human emissions of greenhouse gases could induce climate change. His hypothesis was based on the assumption that carbon dioxide released through coal burning increased the earth’s temperature. The theory was hotly disputed by fellow scientists who argued the human race was too puny to affect powerful climate cycles. The public was unmoved.

In 2006, Al Gore found a more receptive audience for An Inconvenient Truth, as the global warming documentary generated enough interest to gross $50M in worldwide sales. While hardly a blockbuster by feature film standards, its top 10 placing in the documentary category indicated that as a barometer of public awareness, the needle had moved dramatically. Still, it wasn’t until September 2013, that the international scientific community, after years of denial and debate, concluded that in fact, 95% of global warming is man-made.

Facebook, a very different man-made phenomenon, was launched in 2004. 8 years later, it boasted over a billion users. These examples suggest that penetrating collective consciousness requires either a long time, or a lot of people.

How then to account for why family caregiving (hereafter referred to as caregiving), a practice as old as man, currently performed by an estimated 8 million Canadians, has not made its way into the mainstream of public consciousness? If the threat of dire consequences is a missing ingredient—some consider social networking as grave a threat as is global warming—the added effect of longer lives and lower birth rates has yet to nudge caregiving into the realm of public discourse. 

Is this simply a benign oversight, or is there more associated with the term ‘caregiver’ than is evident at first glance? Labels can be highly charged and reflect profound and usually positive changes in public perception. Use of the word ‘disabled’ versus ‘handicapped’ for example, in combination with accessibility legislation, promotes inclusiveness and has elevated public awareness of physical disabilities, while ‘older adult’, having superseded pejorative phrases such as ‘the aged’ or ‘the elderly’, suggests a progressive shift in attitude toward ageism. What then, has kept ‘caregiver’, a label completely without negative connotation, from becoming a household word?

One theory has it that the term ‘caregiver’ has not become part of the vernacular simply because adults caring for aging parents or spouses regard themselves as they always have: as sons, daughters, husbands or wives. Assuming additional responsibility on behalf of a loved one is seen by some as an extension of a long-standing relationship, rather than as a sea change necessitating the re-labeling or redefinition of roles.

Susan Steels, a Clinical Leader of the Geriatric Outreach Team at Southlake Regional Health Centre in Newmarket, Ontario, agrees that caregiving is not fully mainstream, but suggests that forces underlying family relations are complex and highly impactful when illness associated with aging is imposed on the family unit. “I think using the title, caregiver, you are accepting a change in the dynamic of the relationship between an adult caregiver and parent,” she says. “You see your parent as someone who takes care of you. To have to take care of your parent is to accept them as dependent on you.”

This suggests that caregiving, far beyond a cosmetic change in designation, is viewed as a complete recalibration of a long-term relationship. Many older parents do not want a child to do things for them. “It’s difficult for both to accept the power shift from parent to child,” says Ms. Steels. “It’s a badge of honour for a 90 year old to be able to care for themselves and it’s seen as a failure on some level, for him or her to have to rely on a child.” To avoid this threat, given the means to choose between a paid caregiver and a family member, many care receivers would prefer the former.

Pride of place in the community can be a further impediment to accepting the caregiving label. Even when accepting the need of a caregiver, some older adults understand that they are no longer autonomous and yet, for appearance sake, reject the label to avoid publicly acknowledging their loss of autonomy.

While many caregivers readily embrace their new responsibilities, some may be inclined to reject both the label and the role. When assessing a frail senior for example, Community Services will usually want to inform the nearest relative or presumed caregiver. In some cases, the nearest relative is reluctant to assume the role, while others may reject it outright. According to Ms. Steels, the weight of responsibility can be a major deterrent. “Caregiving brings with it a moral and ethical responsibility and if things do not go well, the caregiver feels they are responsible for a bad outcome. When caregiving is shared among siblings,” she adds, “the primary caregiver needs to assume responsibility for communications and key decisions, or expects to, while siblings may not defer to the primary caregiver and blame them if things go wrong.”

Accepting caregiving (and care receiving) as a life passage poses a significant psychological hurdle at the family level and tends to remain there—within the family. In other words, although caregiving as a practice is widespread, in many cases, it remains a private matter. This both stymies mainstream awareness and to the detriment of all concerned, limits knowledge and utilization of caregiving resources. “Caregiving, [as both need and label] is acceptable once both parties have grieved the loss of their long term relationship and accepted the new regime,” concludes Ms. Steels. “Once the designation has been accepted, the caregiver is more responsive to resources directed at caregivers.”

If caregiving is experienced as a relationship-altering event that needs to be grieved, a fraying of the intricate strands of the family dynamic, it is little wonder that it remains on the fringes of the mainstream. Denial however, is an unsustainable luxury.

Unpaid caregivers are often cited as the backbone of the health care system, contributing funds, filling gaps and performing tasks which would otherwise default to overburdened health care providers. Caregiving in Canada requires a delicate balance between the limitations of health care funding and the availability of caregivers to pick up the slack. Those caring for a parent, typically the largest group, tend to range in age from 45 to 64. Based on Statistics Canada projections, the growth rate of that population segment between 2010 and 2031 is estimated at around 8%. In 2010, Canadians aged 65 or over constituted 14% of the population and consumed 44% of health care costs. That segment’s projected growth rate between 2010 and 2031 is estimated at 100%, or 12½ times that of the caregiving population. Extrapolating from these projections suggests that not only would public health care as we know it be financially unsustainable, but those indispensable, gap filling caregivers, so vital to the health care system, may be far too few in number to compensate.

If threats such as catastrophic weather events stemming from the long term effects of global warming, or the risk of virtual experience displacing human contact through social networking presage assimilation into the mainstream, this imminent and very real threat to the health care of the Boomer cohort may ultimately provide the tipping point.