Patient Care Archives

ALS/MND Caregivers and Empathy

January 16, 2014 by Marylee MacDonald

Ms. Tamlyn J. Watermeyer is a doctoral student studying emotional processing and social cognition in Amyotrophic Lateral Sclerosis/Motor Neuron Disease. A researcher at King’s College, London’s Institute of Psychiatry, she presented a paper at the International Symposium on ALS/MND. The symposium took place in Milan, December 6-8, 2013. The abstract for her paper caught my interest. In this email interview, Tamlyn was kind enough to respond in detail to my questions.

Marylee: Apart from the physical changes that happen with ALS, there’s growing evidence that ALS/MND changes the way patients process their feelings. Impaired executive function and loss of empathy can have a big impact on caregivers. You and your colleagues just completed a study where you compared 55 ALS patients to 49 control subjects who otherwise matched them in IQ, mood, years of education, and age. Can you talk tell us whether you found problems with an ALS patient’s decision-making ability?

Tamlyn: We didn’t look at decision-making per se, but the patients in our study were given cognitive tasks which are believed to tap into executive function or processes that may support decision-making in real life. The definition of “executive function” is a controversial topic in psychology. In general it refers to “higher” cognitive processes that supervise “lower” processes that enable reasoning, problem-solving and flexibility of behaviour. Compared to the healthy control participants, some of the patients in our study showed difficulties with tasks requiring abstract and flexible thinking, problem-solving and inhibitory control (the ability to suppress a learned behavioural response).

Marylee: What about other changes in an ALS patient’s emotions, such as the ability to have empathy with others?

Tamlyn: The results of our analyses did not indicate that the patients had problems correctly identifying emotions (happy, sad, angry) from faces. They were also able to “read” the intention and feelings of actors in scenes depicting sarcasm and deceit. However, some patients showed difficulties on a task requiring the inferences of the thoughts and feelings of characters from cartoons and written scenarios. Why they had difficulty on this particular task and not the others might relate to the higher executive demands required by the task.

Separate analyses did indicate that executive dysfunction was related to poorer performance on the tasks assessing the ability to infer emotions and thoughts of others. No differences were found between patients and controls self-ratings of empathic behaviour; however, caregivers rated patients as showing significantly lower levels of some aspects of empathy than patients themselves (see below).

Empathy is an interesting construct to measure in ALS, not only because of the implications for the caregivers of patients, but also because changes in empathic behaviour are common in the behavioural type of frontotemporal dementia (FTD). Research from various fields have associated FTD and ALS at the genetic and neuropathological levels (similar genes and areas of the brain may be involved). Questions remain as to whether the cognitive impairment apparent in some ALS patients is akin (but attenuated) to that seen in FTD patients and whether there might be a cognitive continuum that exists between the disorders, with ALS on one end of the continuum and FTD on the other. That is not to say. however, that ALS patients showing cognitive symptoms will inevitably develop full-blown FTD. In fact, no consensus has been reached as to whether cognitive impairment in ALS progresses with disease. But these observations in ALS patients are interesting as they suggest that the disease may not always be limited to the motor system.

Marylee: Did you find that caregivers were aware of cognitive changes in the people they were caring for?

Tamlyn: We asked caregivers (who were all spouses or partners of ALS patients) to fill out questionnaires relating to patients personalty and cognitive-behavioural change. (The cognitive-behaviour questionnaire included items which assessed patients’ levels of apathy, “executive behaviour” and inhibition). Caregivers rated patients as showing significant changes in personality and behavioural domains since the onset of their illness. (We asked caregivers to rate patients at the time of the interview and approximately two years before the onset of their ALS symptoms). We found that perceived behavioural change, together with severity of limb disability of the ALS patient, significantly contributed to reduced caregiver well being (a composite score of caregiver’s levels of anxiety, depression, burden and strain).
Notably, caregivers reported significantly higher levels of anxiety and depression than the respective patients. Clinicians should be made aware that ALS can bear common but unequal outcomes on patients and their caregivers. Clinical communication with ALS families should emphasise the psychological challenges presented by cognitive-behavioural features, as much as the physical manifestations, of ALS.
Marylee: Did caregivers feel a lack of empathy on the part of the people they were taking care of?

Tamlyn: We asked caregivers to rate different facets of patients’ empathic behaviour (not their own empathy towards the patient). Current models of empathy distinguish between cognitive and emotional components of empathy. The cognitive component relates to the ability to understand another’s perspective or mental state, while emotional or affective empathy refers to the capacity or tendency to respond emotionally to another’s mental state or emotional display.

In our study, caregivers rated patients as showing lower levels of cognitive empathy than patients rated themselves (differences in ratings for affective empathy did not differ significantly), suggesting they felt that patients were less likely or less able to imagine the cognitive viewpoint of another. Exploratory analyses found that the greater the discrepancies between patients’ and caregivers’ ratings for cognitive empathy, the greater the caregivers’ dissatisfaction with their relationship with the patient. As the study was cross-sectional (data collected all at one time point), we were not certain whether lower cognitive empathy in patients (as perceived by caregivers) may cause caregivers’ reduced marital satisfaction or whether low marital satisfaction (either before or after disease onset) might influence caregivers’ reporting of patients’ empathic behaviour.

Future longitudinal research is needed to investigate whether or not the discrepancies between patients’ and caregivers’ perceptions of patients’ empathy become more disparate with time; and if discordant perceptions between the spousal partners contribute to caregivers’ experience (in terms of well being and marital satisfaction) over the duration of the patient’s illness. This design would provide a better indication of causal relationships between patients’ empathy and caregivers’ outcomes.

Marylee: Why is it difficult to measure cognitive changes in patients with ALS?

Tamlyn: Testing cognition over time in ALS patients presents some challenges. Cognitive tasks need to be adjusted to take into account the patients’ physical disability (as had been done in this study). Otherwise the tasks may overestimate patients’ impairment. Not all standardised tasks can be adjusted, and quite often they are verbally based, which can be tricky for patients with bulbar symptoms that worsen with the disease course. Also, testing can be tiring and a greater commitment for patients in the end stage of the disease; loss of data from attrition in longitudinal studies is common. Nonetheless, longitudinal studies of ALS cognition do exist, with some, but not all, finding modest cognitive deterioration in patients over time.

Marylee: Did your research discover anything about the progression of cognitive changes?

Tamlyn: The study wasn’t longitudinal. We relied on retrospective reports of cognitive-behavioural and personality change, which is open to bias such as the memory recall of the respondent.

Marylee: What would you like to add?

Tamlyn: I would just like to highlight that not all patients in the study showed signs of cognitive-behavioural impairment. ALS is a highly variable disease and there is no strong evidence to suggest that cognitive impairment is an inevitable consequence of the disorder. That said, I believe more awareness regarding the possible psychological changes that may present in ALS is warranted. I would encourage frank discussions between clinicians, patients and their families regarding such changes early in the disease course.

Tamlyn Watermeyer [tamlyn.watermeyer@kcl.ac.uk]
King’s College London
Insitute of Psychiatry
Centre of the Economics of Mental Health/Section of Community Health
16 De Crespigny Park
London
SE5 8AF
UNITED KINGDOM

Irish Researchers Study Patient-Caregiver Journey

January 16, 2014 by Marylee MacDonald

Dr. Sheelah Connolly, Research Fellow, was kind enough to do an email interview to tell me more about an Irish study that’s just getting underway. The study takes a comprehensive look at the situation any family finds itself facing in the aftermath of an ALS diagnosis. Dr. Connolly and Dr. Miriam Galvin are the lead investigators. For more about the study design, see the information at the end of this article.

Dr. Sheelah Connolly, co-investigator of an Irish research study to assess patients and caregivers.

Dr. Miriam Galvin is co-investigator in the study to assess the caregiver-patient journey through ALS/MND.

Marylee: Briefly explain what happens now in Ireland when a patient is diagnosed with ALS. Is there immediate support provided to the family in terms of visiting nurses or nurses aides or does the burden of care all fall on the family’s shoulders?

Sheelah: For those patients diagnosed within or referred to the ALS multidisciplinary clinic, the consultant neurologist will refer the patient to the appropriate health services in their locality, as well as arranging a follow-up visit to the clinic, usually within 6 to 8 weeks. The clinical nurse specialist (CNS) is available to patients to answer queries, provide advice and do home visits where appropriate. In addition the CNS will liaise with the community based service providers.
It is less clear what happens to those who are not referred to the multidisciplinary clinic.
In addition, the Irish Motor Neuron Disease Association (IMNDA) – a charitable organisation – provides support for people with ALS, their caregivers and families. This can entail home visits by a specialist ALS nurse, financial assistance towards home care help and the supply of specialised equipment on loan to those with ALS. Upon registration with the association, ALS patients can avail of the services provided by the association free of charge.

Marylee: One focus of your study will be “caregiver burden.” Does that refer to the number of hours the caregiver is “on call” and the anxiety of caregiving, or does it refer to the physical demands?

Sheelah: Caregiver burden will be assessed in a number of ways in the study. Caregivers will be asked the number of hours of care provided as well as the type of care. Caregiver burden will be quantified using the Zarit burden interview, which includes 22 statements about care giving with respondents asked to choose one of five responses ranging from never to nearly always. Some open ended questions will explore both positive and difficult aspects of the caregiving experience, as defined and perceived by the caregivers themselves.

Marylee: In addition to asking patients about depression and anxiety, will you be asking caregivers about that, too?

Sheelah: Yes, depression and anxiety will be measured in patients and caregivers using the Hospital Anxiety and Depression scale.

Marylee: Your study will address try to determine the financial implications of ALS on the household. Will you include renovations needed to make the home more accessible, such as adding a downstairs bath, widening doors, and adding wheelchair ramps?

Sheelah: Yes, the cost analysis will take a societal perspective and include costs associated with health and social care usage (as well as the costs of accessing these services including travel and parking), aids and appliances, modifications to the home and car, any increase in household bills (for example increased heating costs) as well as any alternative or complementary medicine.

Marylee: Will you also ask about the economic impact on caregivers of lost hours from work, lost wages, and possible work furloughs needed when patients are in the final stages of the disease?

Sheelah: Yes, the questionnaire will ask about economic status and hours worked before the onset of caregiving as well as at various stages in the caregiving process. It is anticipated (and seems to be backed up by interviews already completed) that some caregivers are reducing the number of hours worked and/or giving up work altogether as the disease progresses. The questionnaire also has some questions on hours of work missed due to the caregiving role.

Marylee: What about families where there are young children? Are any questions specifically designed to learn if they have different needs than families where the household is just a husband and wife or two siblings?

Sheelah: We do not specifically address the issue of families with young children in our study though it would be an interesting line of enquiry and at least one of our current study participants has children under the age of five.

Marylee: Right now in Ireland, are there many patients living with mechanical ventilation (trach tubes), and if so, who pays for round-the-clock caregivers?

Sheelah: There are very few ALS patients with mechanical ventilation in Ireland; in general it is not recommended by medical professionals and anecdotal evidence would suggest that relatively few patients want it. Of those in receipt of mechanical ventilation, cost is likely shared between the health service and patients family.

The study hopes to develop an integrated program of palliative care that will serve as a “best practices” model for how patients with ALS and other neurodegenerative diseases will be treated in the future. As things stand right now, are families pretty much on their own, or does care depend on whether the patient comes from a rural or urban community?

We are planning on examining differences in care by geographical location within the study. There is, as you suggest, an urban/rural divide in Ireland with people in urban areas generally better served than those in rural areas, especially in relation to the provision of hospices. However, the situation is probably more complicated with not all urban areas having sufficient facilities.

The research team consists of Dr. Miriam Galvin (Research Fellow), Dr. Sheelah Connolly (Research Fellow), Mr Iain Mays (Research Assistant), Professor Orla Hardiman (Consultant Neurologist/Head of Academic Unit of Neurology, Trinity College Dublin)

Here is a brief description about what the study hopes to find out.

The project – A population based analysis of needs, services and outcomes in motor neuron disease (MND)/amyotrophic lateral sclerosis (ALS) – is a prospective study tracking the patient and caregiver journey through ALS. The study will estimate the economic and welfare impact of the condition on patients, their caregivers and the health system, and is part of a larger project which aims to generate a framework of care for ALS patients.

The study aims to identify and recruit 100 ALS patient and their primary caregiver attending the only multidisciplinary ALS clinic in Ireland. Patients and caregivers will be interviewed a maximum of three times over an 18 month period. A wide range of data will be collected on both the patient and caregiver. Face to face interviews in the patient home (where appropriate) will be used to elicit details of the patient demographic and socio-economic situation as well as the health and social care resource use associated with their condition. In addition, quality of life and depression and anxiety will be measured using standardised measures at the home visit. Clinical data on the patient, including details of their diagnosis and progression over time, will be obtained from their medical records. The primary caregiver will also be interviewed in the patients’ home (where possible separate from the patient). Caregivers will asked about their demographic and socio-economic situation including any change in employment status/hours due to their caregiver role. The same standardised measures as used with the patients will assess caregiver quality of life and depression and anxiety with an additional measure used to evaluate caregiver burden. These will be tracked over time in order to assess how the caregiving experience changes as the disease progresses and a series of open ended questions will explore aspects of the caregiving experience.

Data collection began in the summer of 2013 and at present (January 2014), 42 patients and 39 associated caregivers have been recruited and completed time one data collection. Time two data collection is also now underway.

Interpreting Lab Tests

December 3, 2013 by Marylee MacDonald

I just ran across a terrific website that can help you decipher lab results. Often, when a family member is ill, the patient is traumatized by his or her own health issues and can’t think clearly. Caregivers can help when they go with their loved one to the doctor with a list of prepared questions, but after that, the doctor may order lab tests. The results can take a few days to a week or two, and then you’re left with sheets of jargon-filled paper and the possible arguments with your insurer.

What does all the mumbo jumbo mean?

What numbers do insurance companies need so you won’t have a hassle getting reimbursed?

This website won’t have all the answers, but it will have much information that’s delivered in an easily understood format. If you’re more comfortable in another language than English, you’ll find the same info in many different languages, including French and Spanish.

I wish I had known about this website a few years ago. It’s authoritative and far more useful than trolling the internet and trying to find the information another way. It’s far easier than trying to get an appointment with my doctor.

Lab Tests Online is a terrifically useful site for many hard to diagnose diseases such as MS and Huntington’s. Folks facing an Alzheimer’s diagnosis will find lots here to help them thread through the choices they must make.

If you’ve had laboratory tests performed, you may have been given a copy of the report by the laboratory or your health care provider. If not, you may wish to request one from your physician. Once you get your report, however, it may not be easy for you to read or understand, leaving you with more questions than answers. This article points out some of the different sections that may be found on a typical lab report and explains some of the information that may be found in those sections.

Here’s the link, and good luck.
http://labtestsonline.org/