A call to arms this Christmas
If you know someone spending Christmas alone, please take some time out on Christmas day to call them and make sure they know that someone cares for them.
As an academic, I have to read beyond multiple sclerosis (MS) and more often than not, what is happening in other fields informs MS research and clinical practice. The paper below discusses how the COVID-19 pandemic resulted in a significant worsening of cognition in older adults and highlights the need for public health interventions to mitigate the risk of dementia, particularly in people with mild cognitive impairment. I have little doubt that the results would be the same if this research were done in people with MS (pwMS).
A national survey done a few years ago by the MS Society showed three out of five pwMS self-report being lonely. This is why the NHS launched the “Better Lives: every mind matters” loneliness resource to help people feeling lonely at Christmas.
They have sections on:
The UK Government has a “loneliness strategy” and a “Minister for loneliness” to tackle the problem of loneliness in the UK. Having MS makes loneliness worse. MS is a very stigmatising disease that, given sufficient time, causes most pwMS to become disabled. Associated with this disability are the well-documented complications of unemployment, the breakdown of personal relationships, depression, anxiety, cognitive impairment, fatigue and loss of quality of life. As a result of these factors, pwMS are at a high risk of becoming socially isolated and lonely.
Numerous studies have shown that loneliness can be explained by employment status, marital status, upper extremity function, social disability and physical disability. Not surprisingly, other correlates of loneliness included depression, cognitive fatigue, psychosocial fatigue, poor quality of life and suicide.
Loneliness is a modifiable social determinant of health associated with poorer health outcomes and, therefore, needs to be identified and managed as part of the holistic management of MS. This is part of my marginal gains philosophy of managing MS.
What can we do about it? The NHS’s “Better Lives: every mind matters” resources, NHS link workers, social prescribing and self-management are just some tools available to tackle loneliness and social isolation. Simply connecting people increases their social capital, i.e. the size of their social network, which improves health outcomes.
So, if you are spending Christmas alone, you can do some things to help. If you are religious, reconnect with the true meaning of Christmas and try and get to a Church service, either in person or one of the TV, radio or online Christmas services. Pick up the phone and call people: friends, family or one of the many charitable organisations that provide telephone companions. Watch Christmas TV. Listen to Christmas carols. Have a Zoom lunch, dinner or drink with someone alone. Connect! If you can practice mindfulness, please do. Get out if you can for exercise and fresh air. Make sure you fill your day with as many activities as you can.
And if you know someone spending Christmas alone, please take some time out on Christmas day to call them and make sure they know that someone cares for them. If you have any other suggestions to help people alone this Christmas, please share them with us. This is the power of being part of a community, albeit a digital community.
I want to wish you a Merry Christmas or Happy Holidays.
Paper 1
Background: Although the long-term health effects of COVID-19 are increasingly recognised, the societal restrictions during the COVID-19 pandemic hold the potential for considerable detriment to cognitive and mental health, particularly because major dementia risk factors-such as those related to exercise and dietary habits-were affected during this period. We used longitudinal data from the PROTECT study to evaluate the effect of the pandemic on cognition in older adults in the UK.
Methods: For this longitudinal analysis, we used computerised neuropsychology data from individuals aged 50 years and older participating in the PROTECT study in the UK. Data were collected from the same participants before the COVID-19 pandemic (March 1, 2019-Feb 29, 2020) and during its first (March 1, 2020-Feb 28, 2021) and second (March 1, 2021-Feb 28, 2022) years. We compared cognition across the three time periods using a linear mixed-effects model. Subgroup analyses were conducted in people with mild cognitive impairment and in people who reported a history of COVID-19, and an exploratory regression analysis identified factors associated with changes in cognitive trajectory.
Findings: Pre-pandemic data were included for 3142 participants, of whom 1696 (54·0%) were women and 1446 (46·0%) were men, with a mean age of 67·5 years (SD 9·6, range 50-96). Significant worsening of executive function and working memory was observed in the first year of the pandemic across the whole cohort (effect size 0·15 [95% CI 0·12-0·17] for executive function and 0·51 [0·49-0·53] for working memory), in people with mild cognitive impairment (0·13 [0·07-0·20] and 0·40 [0·36-0·47]), and in people with a history of COVID-19 (0·24 [0·16-0·31] and 0·46 [0·39-0·53]). Worsening of working memory was sustained across the whole cohort in the second year of the pandemic (0·47; 0·44-0·49). Regression analysis indicated that cognitive decline was significantly associated with reduced exercise (p=0·0049; executive function) and increased alcohol use (p=0·049; working memory) across the whole cohort, as well as depression (p=0·011; working memory) in those with a history of COVID-19 and loneliness (p=0·0038; working memory) in those with mild cognitive impairment. In the second year of the pandemic, reduced exercise continued to affect executive function across the whole cohort, and associations were sustained between worsening working memory and increased alcohol use (p=0·0040), loneliness (p=0·042), and depression (p=0·014) in those with mild cognitive impairment, and reduced exercise (p=0·0029), loneliness (p=0·031) and depression (p=0·036) in those with a history of COVID-19.
Interpretation: The COVID-19 pandemic resulted in a significant worsening of cognition in older adults, associated with changes in known dementia risk factors. The sustained decline in cognition highlights the need for public health interventions to mitigate the risk of dementia-particularly in people with mild cognitive impairment, in whom conversion to dementia within 5 years is a substantial risk. Long-term intervention for people with a history of COVID-19 should be considered to support cognitive health.
Subscriptions and donations
MS-Selfie newsletters and access to the MS-Selfie microsite are free. In comparison, weekly off-topic Q&A sessions are restricted to paying subscribers. Subscriptions are being used to run and maintain the MS Selfie microsite, as I don’t have time to do it myself. You must be a paying subscriber if people want to ask questions unrelated to the Newsletters or Podcasts. If you can’t afford to become a paying subscriber, please email a request for a complimentary subscription (ms-selfie@giovannoni.net).
Important Links
X (Twitter) / LinkedIn / Medium
General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
It is my first Christmas as a single parent of two teenagers. I’m trying to make the best of it but I find it impossible to let people know I’m struggling. In the absence of invitations and people checking in with me, I’ve taken myself off to the gym to stop the mental spiral. I know that option isn’t available to everyone.
I’m not alone like some people but mentally I feel completely isolated from everyone else. I haven’t yet begun to process being by myself in the MS future, such as it is the great unknown.
Prof. I look forward to your updates. You can’t take the disease away from us but it means a lot to be validated.
Happy Christmas to you.
I'm the one spending Christmas alone this year. I came down with Covid a few days ago. I'm feeling fine but Christmas will be Day 6 and the friends who were coming for Christmas dinner are both clinically vulnerable. So we've rescheduled to New Year's Day.
I am really looking forward to getting outside again and I'm still planning to volunteer at parkrun. New Year's Day was going to be my 100th volunteering credit but it will have to be a couple of weeks later now as I had to miss parkrun yesterday and junior parkrun this morning.
Because I'm feeling fine I've been spending my time working on my core strength, with Pilates, yoga and a runners' conditioning programme. I'm annoyed this has interrupted my marathon training and can't wait to get back to it.
Friends have been good at checking on me and we already had a Boxing Day Zoom call in the calendar. My family is in New Zealand and I'll catch up with them tonight (Christmas morning there) and see the kids open their presents.