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Disclaimers

I have no conflicts to disclose. However, I am receiving financial compensation for speaking.

I am a clinical psychologist in private practice in British Columbia, and work in a volunteer capacity for ALSBC, leading the psychological support program. I am also a member of the Board of Directors for ALSBC, and on the Patient Services Committee.

There is nothing sacrosanct about what I will share with you today. While I will review a little bit of the relevant research, much of what I will be discussing stems from my personal experience working with ALS patients and their loved ones. What works well in one context may not work in another person’s situation.

Each of you has the clinical skills, and I am hoping that with the addition of what you have learned today from Dr. Eisen (and in another session in which you will hear from Mr. Jeff Derby who has ALS and review the ethnographic research), along with some of the tidbits I will share about my experience providing counselling services to ALS patients and their loved ones, you will feel better prepared to address the relevant issues.

Good resources for additional information are the ALS Canada website, and the International Alliance of ALS/MND Associations has a YouTube series on Mental Health Support.

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Overview

Nature of the population you may be seeing

- clinical challenges

Helpful information about ALS
Reflections on my clinical experience working with ALS patients and their loved ones
Research on caregiver wellbeing and treatment

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Whom you may be seeing

In the 12 years that we have run the psychological support program at ALSBC, our experience has been that about 10% of ALS patients and families use the service.

In our experience clients may present at varying stages of the ALS disease process. However, this may be impacted to some degree as you will be seeing patients (and related family members) taking Albriosa. The Canadian Agency for Drugs and Technologies in Health (CADTH) has suggested that Albriosa be initially prescribed to individuals whose symptoms have been present for less than 18 months, have a forced vital capacity of at least 60% of predicted, and do not require permanent non-invasive or invasive breathing support.

There have been a wide range of issues targeted in treatment sessions.

We have seen both ALS patients and caregivers with clinically significant depression and anxiety, and subclinical levels of such.
High rates of negative affect, including guilt, sadness, worry, irritability and anger, have been present.
Helping people cope with news of the diagnosis, and the succession of devastating losses has been a large part of our work with PALS.
Secondary strains such as financial difficulties, relationship stress, fatigue, loss of time for self, reduced quality of life, are often present.
Care decisions such as the appropriate timing to implement various services, respite care, and residential placement, as well as end of life planning, have been the focus of treatment sessions.
Our providers have also dealt with familial issues such as conflict about care and lack of support for the caregiver.
We have also assisted clients during the bereavement stage, undertaking some grief work and helping caregivers reformulate an identity apart from their caretaking role.

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��Information that I have found important in working with ALS patients and caregivers �

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The rate of progression in ALS is variable. However, non-invasive positive pressure ventilation and peg tube for nutrition are 2 measures that have been shown to produce improved outcomes (i.e., greater longevity).

While the absence of cognitive deterioration is commonly cited in ALS, there are subtle cognitive changes in approximately 40% of ALS patients. The areas affected lie near the motor cortex, involving a selective degeneration of the frontal and anterior temporal lobes.

Overt dementia is rare (5%). A small group of ALS patients presents with a comorbid diagnosis of frontal-temporal dementia (FTD). This often consists of apathy, restlessness, mood swings, loss of reasoning and problem solving, and repetitive behaviours. Others may present with primary progressive aphasia (PPA) or semantic dementia (SD).

Whether subtle cognitive changes can be attributed to depression, reduced oxygenation, etc. is not known.

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Another misconception is that ALS patients do not develop a pain problem. Although joint pain is not common, it does occur. In addition, muscle cramping, spasticity, and fasciculations (twitching/muscle contractions) can cause pain. ALS can be painful and pain can occur early in the disease process. ALS patients can also get sensory phenomena such as numbness.

Uncontrollable/inappropriate bouts of laughing or crying can occur in ALS (pseudo-bulbar affect). It is important not to interpret this as emotional lability, but rather the loss of inhibitory mechanisms to shut off behaviour once it is expressed. This is the result of upper neuron involvement .

In ALS samples, 60% of patients had some level of measurable depression compared to 15-20% cited in the general population. One review of the literature showed prevalence rates for depression in ALS patients to range from 0-44%, but when structured interview using DSM criteria was utilized, the rates were 9-11%. Prevalence rates for anxiety in ALS range from 0 to 30%.

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The majority of ALS patients die in their sleep. Some die of cardiac standstill (sudden death) sitting in a chair. In both cases the physiological basis is the same – cardiac standstill, stoppage associated with autonomic nervous system dysfunction. The other common cause of death is pulmonary infection leading to respiratory coma and associated cardiac standstill. The common fear voiced by ALS patients and their families of choking to death rarely, if ever, happens. For most, it is a peaceful death.

Gradual increases in dose of morphine depresses the respiratory system, but this is a valid treatment at the end stages of the disease to keep patients comfortable.

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Resources for Clients

ALSBC has an informational section for caregivers, discussing signs of caregiver stress, compassion fatigue, and methods to reduce stress. I find the documents very useful to review with clients. Discussion of the content, how the suggestions might be implemented within the constraints of the client’s life, and problem solving the barriers to doing so, often forms a part of treatment sessions.

Either for ourselves or for clients that want information re ALS research that has been interpreted and evaluated, ALS.ca is a valuable resource. ALS untangled is a blog/website that deals with alternative therapies for ALS.

ALS.ca has downloadable information for children who have loved ones with ALS, and for parents about talking with children about ALS.

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Reflections upon my clinical experience thus far with this population

I wish to preface this with the fact that I do not consider myself an expert in the field. My comments are meant to generate reflection and discussion amongst ourselves.

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In my experience, increasing the ALS patient and caregiver’s understanding of the disease is often helpful, particularly at the early stages, post diagnosis.

Understanding and knowing what to expect can help to reduce anxiety.

Encouraging people to acquire more knowledge and helping them navigate through this process is important, particularly when working with individuals with an internal locus of control. I have found giving up passivity and denial to be important. I encourage those I work with to communicate their concerns about their health, ask questions, and express feelings. This empowers the patient.

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Differences in the degree of information wanted may occur between the patient and spouse, with one but not the other wanting to know and discuss the research on ALS, various forms of supportive treatments, etc. Helping each of the partners respect these different reactions and coping strategies in dealing with illness is important to the maintenance of a loving relationship. Of note, a supportive relationship predicts quality of life and improved coping among individuals with ALS.

Patients with an external locus of control may not want to be given multiple options for symptomatic support or treatment. They may want the healthcare team to be directive. The opposite will likely be true of individuals with an internal locus of control. That individual will likely study the disease and learn about options for treatment.

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Throughout the different stages of the illness, clients often welcome the opportunity to relay their fears. The caregiver and/or the ALS patient may not be sharing these in an effort to protect the other. As a clinician, it is important to be able to validate their experience, instead of moving quickly into attempting to reduce their emotional distress. Psychological support should both assist with mourning management and provide practical suggestions.

One woman, an ALS caregiver for her husband, reported developing “armor.” She reported that this served a double function. It protected her family from her emotional life, and it protected herself from her own emotional life. She feared that any attention to her emotional life would make her fall apart.

In this context, exploring the possibility that feelings might assist the caregiver stay strong for their loved one, make better decisions, stay emotionally connected to their family, was helpful.

What if you could learn from your feelings?
What if, instead of shelving and neglecting your feelings, they could help you in your important role as a caregiver?

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ALS is truly a family disease. Interventions aimed at enhancing the effective communication between patients and caregivers seems to improve the psychological well-being of both parties, helping patients to be more aware of their caregivers’ needs and caregivers to accept their straining, but invaluable role.

I have noted in my practice (do not make too much of this because of the small sample size) that unresolved anger and fear around the symptoms results in greater reluctance to participate in family or social functions, and the reduced quality of life leads to a decrease in psychological well-being.

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Helping patients cope with the introduction of auxiliary devices into their lives is also important. These devices often represent a loss of autonomy and a limitation in freedom. Within the therapeutic relationship, feelings about this can be processed and managed. This may help not only the ALS patient cope, but also improve the relationship with caregivers who can be the recipient of displaced anger, etc.

Loss of the ability to communicate through speech becomes a reality for ALS patients at some point. Helping them to realize that living without speech is not living without communicating is important. In addition, helping couples find a way to communicate is important in reducing emotional distress arising from frustration and anxiety. Speech banking, eye gaze technology, communication boards, preprogrammed messages, text to speech programs, and voice amplification devices, are among the many helpful options.

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Decision making around respiratory assistance and nutritional management, as well as end of life issues, becomes the reality of ALS patients and their families at some point. Providing an opportunity for them to express their feelings and doubts often becomes part of the therapeutic process.

Patients who use BIPAP can experience anxiety, and want to reject use of the mask. They feel like they are sufficating and experience increasing anxiety. Relaxation techniques can be valuable in this regard.

As the disease progresses, patients and their caregivers often become fearful of dying. Thoughts of choking to death, being unable to breathe, and more generally suffering a painful death, often arise. Sharing information about death in ALS has been helpful.

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Over time, patients are no longer able to function in roles that once defined their lives and their sense of purpose. They struggle with identity issues and sometimes feelings of worthlessness. Worry and concern about being a burden on others is often present.

Existential questions arise. Discussion of spiritual beliefs and values has been an important aspect of my work with ALS clients. While I believe it is important to recognize that there may be no solutions to many of the existential issues that patients with ALS are faced with, finding some meaning in their experience is a crucial element in effective coping.

Meaning making is also important for ALS caregivers. Research on caregivers supports this.

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In treatment I often work toward increasing the patient’s involvement in the family as this seems to increase feelings of purpose and meaning. Making efforts to take the patient on outings, seek his or her input on family decisions, keeping them apprised of events in each family member’s life, etc. can contribute significantly to the ALS patient’s psychological well-being.

A central goal of my work with ALS patients and caregivers has been maintaining a sense of hope. I am not speaking of hope of the patient being cured, but a recognition that they can still lead meaningful and high-quality lives. I seek to shift the dynamic from a focus on the effects of ALS to a focus on sharing life together and maintaining the highest quality of life possible.

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To address the inevitable adversities faced as a result of ALS requires trust in others and oneself. To be resilient in dealing with adversity, you need to place some trust in others. You cannot deal with this sort of adversity alone. In treatment sessions it is often useful to explore barriers to doing this (e.g., fear, impact on identity).

Self-confidence in one’s abilities to solve problems and cope is also important. Tapping into past successes and/or experiences of personal growth can be helpful.

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King et al. (2009) found that adopting an internal locus of control, focused on self-care, mindfulness, and self-empowerment, rather than health and the effects on others (external factors), boosted subjective well being among ALS patients.

Problem focused (i.e., managing the source of stress) and emotion focused coping (e.g., meditation, journaling, reframing) has been found to increase the perception of control which was a key component to aiding the management of hopelessness, despair, powerlessness, and loss of identity among ALS patients. (Larsson et al., 2017).

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I have found the resiliency paradigm outlined by Grotberg (1999) helpful in tapping a client’s inner strength. This paradigm looks at “I have”, “I am” and “I can” resiliency factors.

“I have”

One or more persons I can trust and who love me without reservation
Those who care about my personal needs and health
Access to the health services I need
A team of knowledgeable medical professionals who will develop an individualized care plan for me so that I can live to my fullest potential

“I am”

Special to my family and others
Trusting in you to treat me as you would your own child
A person who respects myself and others
Empathetic and caring

“I can”

Solve problems for myself, yet count on my loved ones and health professionals to help me out if I need it
Generate new ways to do things
Reach out for help when I need it
Express thoughts and feelings in communication with others
Manage my behaviour, feelings and impulses

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Financial stress often becomes a reality for the patient and family. Guilt and anger can ensue. Utilizing available resources through the provincial ALS organizations, and problem solving methods to cope, is important, and facilitating this in treatment is sometimes required.

Loneliness is also a big problem. When ALS patients need social support most, they are often alone. Not only can they not participate in many previously enjoyed activities with others, but there may also be some movement away from them due to the discomfort of others (e.g., avoidance resulting from uncertainty and anxiety about what to say and how to act around them).

The caregiver, as well, often experiences loneliness and isolation, which can lead to resentment and guilt.

Sexuality can become an issue that impacts relationship quality. While ALS does not directly impact sexual function, role changes, fatigue, depression/anxiety, pain, immobility, and respiratory problems, can limit sexual activity.

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I have found the concept of a caregiver’s needs pyramid, as outlined by Stephen Wiet, helpful in directing how to proceed in treatment

�

Time for Me

Peace of Mind

Simplify My Life

Help Me Make Better Decisions

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The bottom part of the pyramid is the foundation. The top is the ultimate goal, without compromising the healthcare needs of the individual’s loved one.

Helping caregivers to make good decisions in an expedited way is the foundation that frees up time to spend on other aspects of the pyramid.

Resources available from the ALS societies can be invaluable in this regard. These resources, such as equipment loan programs, can also assist caregivers at the second stage in the pyramid, to simplify their lives.

Finding easier ways to achieve something (i.e., lifts, ergonomic strategies to transfer loved ones, web tools that schedule assistance from friends and family) and identifying priorities, are important in simplifying life.

Our own education about ALS is also helpful in that ALS caregivers do not have to waste valuable time and emotional resources educating us. Instead, treatment sessions can focus on the provision of support and problem solving.

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Exploration of what makes the client resist help may be necessary. Alternatively, if a client does seek help, do they resent the labels put on their condition or the advice given (adopting a ‘you don’t understand me’ perspective). Do they resent or feel that they have initiated a dependency-based relationship?

Trusting others to help, finding meaning, and dealing with guilt, are examples of the 3^rd stage of the pyramid.

Caregiver guilt is an issue I have frequently dealt with in treatment sessions. Helping caregivers identify the underlying thoughts and emotions that cause the guilt can be a first step in helping them to move forward.

Caregivers sometimes feel guilty about taking time or seeking help for themselves when their loved one is experiencing much greater distress.

Guilt also occurs when they feel that they “should” be able to provide better care, despite all the things they have to do.

Feeling resentful or obligated to provide care can lead feelings of guilt.

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Meaning making interventions have been used to treat individuals with life threatening/terminal illnesses.

While we do not have time to go through these in detail today, I would refer you to these resources:

William Breitbart and Shannon Poppito’s (2014) book entitled, Individual Meaning-Centered Psychotherapy for Patients with Advanced Cancer

Gary Rodin’s CALM intervention (Managing Cancer and Living Meaningfully) which consists of a semi-structured intervention that targets 4 dimensions: 1) symptom management and communication with healthcare providers; 2) changes in self and relations to close others; 3) spirituality, sense of meaning and purpose; and 4) thinking of the future, hope and mortality.

CALM has been adapted for ALS patients by Oberstadt in Germany to include 2 additional dimensions, communication skills and emotional expression and control. It has been called Managing Burden in ALS and Living Meaningfully (mi-BALM)

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I want to end this section with a heavier, more somber topic.

When ALS patients perceive their quality of life has become unbearable, they may request to hasten death. This desire should be discussed in an open exchange that does not involve taking a position or stance for or against this decision. It is one in which we are present with the client.

MAiD should not be directly brought up with a client. The College of Psychologists of BC has developed a Practice Support Checklist (#11) on MAiD. In it we are reminded that counseling someone to commit suicide is a criminal offense.

It is strongly recommended that this not be brought up, but it is fine to provide information if the client raises the issue. As much as possible, the College suggests referring the individual to their physician or Health Authority for information about MAiD. Not contained in the directive, but I believe is prudent, is that we provide detailed documentation of conversations about the issue. I anticipate that this would be especially useful in the event that family members do not agree with an individual’s decision to pursue MAiD.

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I believe that beyond giving information about where to access information about MAiD, whenever an individual expresses a wish to die, it should trigger an inquiry into underlying reasons.

While people often think it is physical factors and pain that are primary in this regard, psychosocial issues frequently contribute to the person’s request. Emotional distress including anxiety, depression, feelings of hopelessness, existential distress, anger, fear of dying, loss and grief, loss of dignity, and loss of a sense of control, may play an important role. Social distress including social isolation, feelings of being a burden, concurrent stressors (e.g., financial costs), strained relationships, loss of valued roles, and self-stigma, may be present. In ALS, where physical factors play a role, the associated hopelessness, loss of dignity, demoralization, loss of independence, and feeling like a burden, can spur on desire for death.

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Identifying clinical problems that may be treatable, and interpersonal issues and stressors that may be involved, can lead to discussion about possible alternative solutions that the client may wish to, but are not obligated to, consider. For example, feeling they are a burden may suggest a conjoint session with family members to discuss. Financial issues may point to the need to enlist the services of a financial advisor. Meaning making interventions may be prudent for individuals who express a lack of purpose in life.

While a number of ALS patients choose MAiD, it remains a minority.

It is strongly recommend that you consult your own professional organization regarding this issue. Please also note the importance of being self-reflective, aware of our values, and your own need for support. This is weighty, and we must act to prevent and manage our own sources of distress. I am willing and would be honored to debrief with any of you, if at any point in your journey with ALS patients and caregivers you feel it would be helpful.

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Living the Gift

ALSNSNB’s psychological support program, which was modelled after that of ALSBC, is entitled ‘Living the Gift’ to commemorate a very courageous and wise man, the late Charles Bower, who passed away as a result of ALS on July 17, 2015.

Living the Gift: How to Breathe Life into Death – One Day at a Time, is a compilation of 144 blogs he wrote during his 4 year journey with ALS. They are heartfelt reflections on his own life and dying process.

These blogs advocate for one to lead a more meaningful and fulfilling life, and are replete with messages espousing the importance of acceptance and mindfulness. I found his entries not only enlightening, but also commensurate with the work we do as psychologists in treating those who are suffering.

I leave this section with his wise words, “The secret to dying well is living well.” I believe it aptly states the pivotal challenge to direct our lives and our work with others.

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General Research on Caregiving

Research on caregiving suggests that it is associated with poor outcomes for the caregiver. Specifically, caregiving has been correlated with an increase in anxiety and depression, and an increase in physical health problems. At least in caregivers of individuals with dementia, rates of depression range from 28-55% compared with 15% in community samples.

Interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers’ motivation for providing care. Relationship quality has been found to be a factor predicting caregiver well-being in numerous studies (Burgener and Twigg, 2002; Quinn et al, 2009).

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Quinn et al’s (2010) systematic review of a limited number of studies found that finding meaning can have a positive impact on dementia caregivers’ well-being.

In a follow up paper in 2012, the authors once again found support for the role of meaning, as well as motivations, and relationship quality, in caregiver burden, captivity, and competence. They found that higher intrinsic motivations were associated with lower burden, role captivity, and higher competence, whereas higher extrinsic motivation to provide care were associated with higher burden. In addition, better pre-caregiving relationships and current relationship quality was associated with higher well-being in caregivers.

They argued that interventions aimed at reducing caregiving stress and promoting feelings of caregiving competence should take into account the impact of these factors. With respect to interventions for caregivers, they postulated that caregivers who had higher extrinsic motivations may require more support to help them cope with caregiving. Similarly, caregivers with poor relationship quality with the care recipient, would likely require more support. Given the relationship between relationship quality and outcome, they noted that interventions could aim to help caregivers identify positive aspects of providing care. This would enhance meaning and thus, potentially augment well-being.

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The influence of social support on caregivers well-being has also been well established in the literature.

Satisfaction with social support has been found to be a better predictor of caregiver psychological well-being than the amount of support (Sander et al, 1997; Ownsworth et al, 2010).

This suggests that efforts not only to establish and maintain a supportive network, but also cognitive work regarding appraisals of the supportive environment may be useful.

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I have found very few articles on the psychological status of caregivers of ALS patients specifically. The data I was able to locate was as follows:

The worsening of ALS patients’ motor symptoms and increased disease duration is related to greater caregiver burden (Goldstein et al, 1998; Adelman et al, 2004; Chio et al, 2005).

Functionality and quality of life were negatively correlated with caregiver burden. Specifically there was a significant association between the patient’s emotional state and their interaction with family and environment, and caregiver burden (Thomas et al., 2018)

In a paper by Chio et al (2010), frontotemporal-related neurobehavioral symptoms were related to lower quality of life among caregivers, higher depression and higher caregiver burden. These neurobehavioural symptoms (personality changes, apathy, irritability, poor insight, and deficit in frontal executive tests) were present in 50% of the sample of ALS patients and related to bulbar symptoms. It was apathy and executive dysfunction, rather than disinhibition, in patients that correlated to the worsening of caregivers psychological strain.

A 2021 qualitative study, that both Dr. Eisen and I were a part of, looked at the impact of respite care on people with ALS and their care partners. The reported benefits of respite care included improved quality of the patient-care partner relationship, increased personal time for the care partner, and improved well-being for both the care partner and person with ALS.

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Poulin et al’s (2010) study of spouse caregivers makes the interesting distinction between helping behavior (i.e., assistance with ADLs and other tasks) and “on call” time (long stretches of passive vigilance).

The authors note that helping behaviors such as volunteer work, etc. have traditionally been associated with improved psychological well-being, whereas this has not been found in caregiving. They posited that it is the adverse effect of on call time that contributes to this deleterious effect. This was supported in the study. Time spent actively helping the care recipient predicted greater positive affect, but time spent on call predicted lower positive affect.

They speculated that providing help may lead caregivers to appraise the caregiving context in a more positive light (i.e., an opportunity for them to grow or as a better outcome for their partner than if someone else were providing care) or may lead them to experience positive emotions such as love and empathy.

In addition, the study found that caregivers who perceived themselves as highly interdependent with their spouse (sharing a common fate) appeared to derive positive rather than negative emotion from helping. When reciprocity has been the expectation in the relationship, caregiving is more burdensome.

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��Papers on the efficacy of psychological treatment for caregivers �

A very interesting paper on improving the quality of life of caregivers of persons with spinal cord injury (Schultz et al., 2009) demonstrated that caregivers benefited from interventions that help them:

1) manage the medical and functional limitations of the care recipient;

2) enhance support from formal and informal resources;

3) reduce social isolation; and

4) encourage them to monitor and improve their own health

and well-being.

The most salient finding was that it was critical that both members of the dyad be involved in clinical interventions.

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Gallagher-Thompson and Coon’s (2007) meta-analysis of evidence-based psychological treatments for distress in family caregivers of older adults found that effect sizes for CBT based interventions was quite high.

Targeting perceived burden, mood issues, and perceived stress in treatment, as well as coping and self-efficacy, was important.

The authors noted that more research on which interventions are most effective for caregivers of loved ones with different levels of impairment and different stages of their illness was needed.

Similarly, more research on which intervention are most likely to be effective with caregivers of various ethnic and cultural backgrounds is needed.

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A review of the literature suggests that interventions that combine caregiver education, skill training, and cognitive behavioural therapy appear to be the most effective for reducing caregiver burden and emotional distress, including anxiety and depression.

With respect to palliative caregiver interventions, therapeutic life review has been used as a treatment to enhance positive emotions and existential/spiritual domains. A life review/reminiscence, combined with creative activity resulting in a tangible memento representing accomplishments and meaningful lessons from the patient's life that the caregiver helps create and can keep after the patient's death, has been typically utilized. Individuals with advanced, chronic illness and likelihood of death or functional decline within two years and their caregivers have participated. According to the APA, these interventions have good methodological bases but require more investigation to be judged “well-established.”

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�Suggested Readings: �

American Psychological Association, A Caregiver’s Briefcase (2010).

Eisen, A. and Krieger, C. (2013) Ethical Considerations in the Management of Amyotrophic Lateral Sclerosis, Progress in Neurobiology.

Forrest, E.C. (2017) Investigating the Psychological Effects Associated with Motor Neuron Degeneration in Persons Diagnosed with ALS. Portland State University

Oberstadt, M. et al. (2018) Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients with Amyotrophic Lateral Sclerosis: Adaptation of a Short-term Psychotherapeutic Intervention, Frontiers in Neurology.

Qualls, S.H. and Williams, A.A. (2013) Caregiver Family Therapy: Empowering Families to Meet the Challenges of Aging, American Psychological Association.

Pagnini, F., Rossi, G., Lunetta, C., Banfi, P, and Corbo, M. (2010) Clinical Psychology and Amyotrophic Lateral Sclerosis, Frontiers in Psychology.

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�One last, but very important note!

I would like to express my sincere appreciation for your willingness to learn about ALS and be part of this initial group who will provide psychological treatment services to ALS patients and their caregivers.

I hope the information provided will be helpful to you in doing so.

I am available for consultation as you begin to do this work. I can be reached at Drebannerman@gmail.com