We all know that MS is a bad disease with a massive socio-economic impact. However, the personal toll is even larger. Reduced life expectancy, higher suicide rates, unemployment, high divorce rates, depression, anxiety, fatigue, substance abuse, cognitive impairment, loneliness, social isolation and poverty are just a few of things that can and do happen to pwMS.
One I have not discussed before is apathy, which is common in MS and is part of a symptom complex in people with more advanced MS. PwMS who are apathetic simply lose interest and have no enthusiasm for life and interventions to help them. Apathy is not necessarily depression. In this cross-sectional Italian study, a third of respondents were apathetic. This is much higher than I would have predicted but may explain why pwMS as a group are not as activated as other disease-specific communities, i.e. MS has shredded that part of the brain that motivates them to do things.
I would add that if you are reading this blog post you are unlikely to be suffering from apathy. It is the pwMS who don’t read this blog that worry me. As apathy predicts poor outcome in MS we should add it to the prognostic profile calculator we use to profile MS patients in terms of treatment decisions. PwMS who are apathetic should also be considered as being at high risk of complications and hence should be seen more often.
Apathy is another reason to treat MS early and effectively.
Raimo et al. Assessing apathy in multiple sclerosis: Validation of the dimensional apathy scale and comparison with apathy evaluation scale. Mult Scler Relat Disord. 2019 Nov 25;38:101870.
BACKGROUND: Apathy is a predictor of cognitive decline in the course of multiple sclerosis (MS). Early identification of apathetic patients is relevant in clinical settings.
OBJECTIVE: To assess the applicability and psychometric properties of the self-rated version of the Dimensional Apathy Scale (DAS) in a large cohort of patients with MS and to compare its diagnosing accuracy with that of the Apathy Evaluation Scale (AES).
METHODS: One hundred and twenty-four patients underwent a clinical interview based on diagnostic criteria for apathy, DAS, AES, and assessment of depression, global cognitive functioning, and non-verbal intelligence.
RESULTS: According to diagnostic criteria, apathy occurred in 33.4% of the patients. The DAS showed high consistency, and good convergent, discriminant and criterion validity. Factor analysis indicated a three-factor structure: executive, behavioural and emotional apathy. Unlike AES, no significant association between DAS score and severity of neurological disability (expressed by EDSS total score) was found, suggesting that the DAS might be less related to levels of disability. Receiver operating characteristics analyses, with clinical diagnostic criteria for apathy as the gold standard, revealed that a DAS score of 28/29 and an AES score of 35/36 were optimal cut-off values for identifying clinically relevant apathy. The two scales had similar diagnostic accuracy in the present sample.
CONCLUSIONS: The DAS is a valid and reliable multidimensional tool to assess apathy in MS, with diagnostic accuracy similar to that of the AES. However, the DAS score appears to be less strongly related to neurological disability.
I suspect apathy is often related to other symptoms. For example, after Christmas lunch someone might suggest a walk through the woods. I can walk ok for 20 mins but then foot starts playing up a bit. So I start thinking about the distance – they probably want to walk for an hour. Then there’s the terrain – uneven surfaces are more of a challenge. Then you start thinking about the loo – you’ve had a few glasses of wine with lunch and there’s no toilet in the woods should you need one. Solution- you stay at home and do the dishes. I’m fairly low on the EDSS but all these considerations come into play. So it’s not that I’m apathetic, just very practical and thinking ahead.
Is apathy not also a coping mechanism when things just get too much? A psychological protection mechanism against stress. I know I get stressed thinking about how I will physically cope with getting things done that I need/want to do.
I would add to my comment that, being someone who has always been fiercely independent, the mere idea of having other people do stuff for me is awful. I could imagine this being misinterpreted as lack of enthusiasm for accepting help.
Excellent point. Same w/ me. You know on the front end how you will feel if you do X or X. Also my husband always says you shouldn’t do that , you’ll get too tired or you might fall. Arguing about it is stressful so I just give up and do nothing.
Totally agree with other comments made: MS really wears down your confidence to the extent that you are hesitant to do anything outside your comfort zone. My mobility is not noticeably compromised at the moment but I’d be more apathetic if it was. More years of underfunding of the NHS will be very detrimental to addressing the complex needs of people with MS.
Prof G,
“We all know that MS is a bad disease with a massive socio-economic impact. However, the personal toll is even larger. Reduced life expectancy, higher suicide rates, unemployment, high divorce rates, depression, anxiety, fatigue, substance abuse, cognitive impairment, loneliness, social isolation and poverty are just a few of things that can and do happen to pwMS”
As we approach Christmas and the year 2020, please can you post something positive about MS research ie something that gives us a tiny bit of hope! I wonder how you would cope with the list of potential negative impacts from this disease? My main apathy relates to MS research. So many promises and expected breakthroughs yet all we hear is that MS is more complex and more destructive than originally thought. 2019 has not been a good year for MS research.
I would no describe thinking thorough an invite to walk and proactively thinking through the pros and cons as apathy. Maybe prof g can give a couple examples of what he means by apathy?
The suggestion about your brains motivation having been shredded is very believable to me. Situational apathy (which is usually a form of depression) is treatable but not if that part of the brain is damaged
‘Apathy does it affect you?’
Yes I am stressed and drained by it. But it’s not mine.
This could be just be central to finding the cause of MS along with related Anxiety, Fatigue, Depression etc. Needs joining up in a MS context?
It reminds me of the Marks and Spencer (M&S) TV adverts. To paraphrase:
This is not just Apathy, this is MS Apathy.
This is not just Anxiety, this is MS Anxiety.
This is not just Fatigue, this is MS Fatigue.
This is not just Depression, this is MS Depression .