Are you a carer?
Is informal caring good or bad for the carer’s brain?
In today’s Guardian, there is an article covering a new English Longitudinal Study of Ageing by Xue and colleagues (see below), which discusses the long-running debate about whether informal caring is good or bad for the carer’s brain.
The answer, it turns out, depends on what kind of caring you do. Looking after a parent for a few hours a week outside the household appears to preserve executive function. But caring for a partner or spouse at home for 50+ hours a week is associated with a faster cog than in matched non-carers. Memory showed the same pattern, but more weakly. Neither sex nor wealth lessened the effect. The finding lands awkwardly for neurology and multiple sclerosis (MS): the carers we depend on most—the spouses of people with MS, Parkinson’s disease, motor neurone disease (MND), Huntington’s disease and dementia—sit in this high-risk category.
I will try to summarise what we know about the scale of this burden, what it does to the carer’s mental and physical health, the under-recognised risk of domestic violence and abuse running in both directions, and the resources—patchy, underfunded, but real—that exist to help people who are carers.
Scale of the problem
Around 8% of the UK population—roughly 5–6 million people—are providing unpaid care at any one time, and approximately 1.5 million of them provide 50 or more hours of care per week. Over a lifetime, around two in three UK adults will spend some period as an unpaid carer. The economic value of this work has been estimated at over £160–180 billion a year, comparable to the total NHS budget. Carers UK polling in 2024 found that 62% of current and former carers said they had no choice but to take on the role, driven by the absence of any viable alternative.
Neurodegenerative disease is one of the principal drivers. Around 150,000 people live with MS in the UK, and roughly 69% of people with MS receive informal care, with spouses providing up to 70% of that care. The pattern is mirrored across Parkinson’s, MND, Huntington’s, atypical Parkinsonian syndromes, and the dementias. Because these conditions are progressive, fluctuating and often span decades from diagnosis, the carer’s role rarely shrinks, but accumulates. A carer who started by occasionally fetching a coat ends up, ten years later, managing catheters, hoists, medication schedules, financial affairs, and increasingly the cognitive and behavioural symptoms of the disease.
This is precisely the configuration—high-intensity, in-household, spousal, long-duration—that Xue and colleagues identify as the highest-risk profile for accelerated cognitive decline in the carer themselves. We are, i.e. society, in effect, generating a second group of brain-vulnerable people in the slipstream of every neurodegenerative diagnosis.
Impact on mental health
The mental health toll on informal carers is large, consistent across conditions, and disproportionately concentrated in spousal carers. A 2025 review of 18 meta-analyses reported median pooled prevalences of 33% for depression, 35% for anxiety, and 49% for caregiver burden across informal carers globally. Carers of people with dementia, stroke and progressive neurological disease consistently sit at the higher end of these ranges. In MS specifically, qualitative work has documented a recurring constellation: sense of loss, emotional exhaustion, social isolation, anticipatory grief, and chronic anxiety about disease unpredictability.
Spousal carers fare worse than other carer types. They are older, more isolated, less likely to share the load, and locked into the relationship in a way an adult child caring for a parent is not. They also lose the partner as a source of emotional support at the same time as the demands of care escalate—what Aneshensel and Pearlin called the “unexpected career” of caregiving. The Lacey et al. (Lancet Public Health, 2024) propensity-matched UK analysis showed that transitioning into intensive unpaid care produces a measurable worsening of mental and physical health that persists for years.
The finding of cognitive decline from Xue et al. should be read in this context. Chronic stress, sleep disruption, social withdrawal and depression are themselves established risk factors for cognitive impairment; the carer’s accelerated executive-function decline is not a mystery—it is the predictable downstream signature of grinding chronic stress with no exit.
Impact on physical health
Carers are more likely than non-carers to report poor general health, to attend A&E, and to be admitted to hospital, even after adjustment for age and socioeconomic status (ONS, 2024). Around 43% of current or former UK carers report that a mental or physical health condition has developed or worsened since taking on the caring role (Carers Week 2025). Female carers report disadvantage more often than male carers (64% vs 52%).
Mechanisms are multiple and overlapping: musculoskeletal injury from lifting and transferring; chronic sleep fragmentation from night-time care; missed or postponed health appointments for the carer themselves; reduced physical activity; deteriorating diet; increased smoking and alcohol use; and—on the biological side—sustained sympathetic and HPA-axis activation with the inflammatory and metabolic consequences that follow. A landmark US longitudinal study found that carers reporting emotional or mental strain had a 63% higher mortality risk than matched non-carers.
For spousal carers of people with MS or other progressive neurological disease, the trajectory often involves the carer themselves entering older age with their own emerging morbidities, just as the care recipient becomes most dependent. Two frail people, one home, no slack, no resilience.
Domestic violence and abuse
Domestic violence and abuse (DVA) in the context of neurodegenerative disease is a hidden, under-reported and under-researched problem—and it runs in both directions.
Women with MS face an elevated risk of being abused by their partners. A cross-sectional Iranian study of 275 married women with MS reported domestic violence prevalences of 53% psychological, 63% economic, 34% physical, and 20% sexual. UK clinicians have begun to describe similar patterns: partners removing walking aids, withholding medication, removing wheelchair batteries, and intercepting communication. A 2026 JAMA Neurology Viewpoint specifically called for routine, trauma-informed safeguarding in MS care, noting that disability, cognitive impairment, fatigue, financial dependence and isolation create unusual vulnerability to coercive control. The COVID-19 lockdowns made the problem visible to many of us, i.e. MS HCPs, for the first time.
The opposite direction is also real. Around 20% of people with newly diagnosed dementia have behaved aggressively towards a caregiver, and Australian police-record analysis identified dementia-related domestic violence events in which spouses were the most common victims (51%), with physical assault present in over 80% of events. Disinhibition, frontal-lobe dysfunction, misidentification syndromes, agitation in the context of pain or delirium, and—less commonly—pre-existing patterns of abuse that re-emerge as inhibition weakens, all contribute. Similar issues arise with the behavioural and psychiatric features of MS, late-stage Parkinson’s, Huntington’s disease, frontotemporal dementia and traumatic brain injury, although these have been studied less.
Compounding both directions: research from the US has shown that, in many couples where abuse occurs in the context of dementia caregiving, abuse was already present in the relationship long before the diagnosis. The illness amplifies and shifts an existing dynamic rather than creating one from nothing.
The implication for neurology and MS is uncomfortable but unavoidable: asking about safety at home should be part of routine reviews for MS, Parkinson’s, MND, and dementia, with the carer and the patient seen separately at least intermittently. HCPs need to know their local safeguarding pathway and—crucially—be aware that the carer is also a potential victim, not just a potential reporter.
UK resources and support
Statutory framework
Under the Care Act 2014 (England), Social Services (Scotland) Act 2013, and equivalent legislation in Wales and Northern Ireland, any adult providing regular unpaid care is entitled to a Carer’s Assessment (Adult Carer Support Plan in Scotland) from their local authority. This is the legal gateway to most other statutory support, including respite, direct payments and equipment. Uptake is poor: Carers UK report that around 39% of those who haven’t had one cite simply not knowing it exists. Please note that employees in England, Scotland and Wales (not yet Northern Ireland) are entitled to five days of unpaid Carer’s Leave per year under the Carer’s Leave Act 2023, taken as half-days, full days or a block.
Potential financial support for carers
Carer’s Allowance (England, Wales, NI) — £86.45/week from April 2026 for those providing 35+ hours of care to someone receiving qualifying disability benefits (PIP daily living, Attendance Allowance, DLA care component middle/higher rate). Earnings cap £204/week net. Notoriously low, with a hard cliff-edge at the earnings threshold. The DWP is currently reassessing overpayment debts accrued between 2015 and 2025 following the Sayce Review.
Carer Support Payment — Scotland’s replacement for Carer’s Allowance, paid at the same rate but with a more carer-friendly administration.
Carer’s Credit — National Insurance credit for those caring 20+ hours/week but not eligible for Carer’s Allowance.
Carer Element of Universal Credit — additional monthly payment for those caring 35+ hours; usually a better-off route than Carer’s Allowance for working-age carers.
Council Tax discounts, Pension Credit Carer Addition, Housing Benefit Carer Premium — frequently missed top-ups; a Turn2Us or Citizens Advice benefits check is usually worth doing.
Discretionary grants from the MS Society, Parkinson’s UK, the MND Association, the Alzheimer’s Society, Independence at Home, and the Royal British Legion (for veterans’ families) — particularly useful for one-off costs such as equipment or short breaks.
Respite and replacement care
Respite—or what Brimblecombe and colleagues have argued should more honestly be called “replacement care”—is the single most consistently requested form of support across UK carer surveys, and the single most rationed. It ranges from a few hours of sitting service through to one- or two-week residential placements for the person being cared for. Funding is variable, often means-tested via the local authority, and frequently rationed below what carers need to sustain the role. Charitable sources (MS Society respite grants, Carers Trust local network breaks, Revitalise short breaks) plug some of the gap. The evidence from Lacey, Brimblecombe, and colleagues strongly suggests that adequately resourced replacement care is the single most cost-effective intervention available.
Information, peer support and training
Carers UK — 0808 808 7777 helpline, online Carers Connect forum, benefits and rights guidance, and employer programmes.
Carers Trust — 0300 772 9600; a network of around 130 local carer services across the UK offering one-to-one support, training and group activities.
Mobilise — online peer community, daily virtual cuppa (45-minute video calls with other carers), financial checklists; founded by carers from an MS-affected family.
Condition-specific carer support — MS Society, MS Trust, MS-UK, Parkinson’s UK, MND Association, Alzheimer’s Society, Huntington’s Disease Association. All run carer-focused information lines, local groups and information resources.
Young Carers services — through Carers Trust, Action for Children and Barnardo’s. Important for families where a parent has young-onset MS, Huntington’s or familial dementia.
Psychological support — IAPT/NHS Talking Therapies accept carer self-referral in most areas; some MS centres and memory services offer in-house carer counselling; Mind has specific resources on caring while coping with mental health difficulties.
Safeguarding
Where DVA is suspected—in either direction—the relevant routes are the local authority safeguarding adults team (statutory duty under the Care Act), the National Domestic Abuse Helpline (0808 2000 247, Refuge), Galop (LGBTQ+ victims), Hourglass (older victims, 0808 808 8141), and SafeLives (training and frameworks for professionals). The Domestic Abuse Act 2021 introduced new protective orders and statutory definitions that explicitly cover coercive control.
Recently, the Horne Family Charitable Fund initiated a project to gather information about DVA in pwMS. The initiative has improved our understanding of DVA’s impact on people with MS and its implications for MS clinical practice. The study was conducted as a partnership between the University of Leeds and Nottingham, and they have now developed a toolkit for MS HCPs to equip them with the knowledge to safely identify and respond to signs of DVA in clinical settings. A version of their resource ‘A Toolkit for Multiple Sclerosis Healthcare Professionals‘ was launched at the recent MS Trust Annual Conference. Please read it and share any feedback and insights with the group to make sure it is fit for purpose.
I have asked Rachel Horne to write a guest MS-Selfie newsletter on DVA and the project she so kindly funded. I think the issue of DVA needs a lot more attention than we have given it in the past.
International picture
The pattern is broadly similar across high-income countries, with national variation in the extent to which the burden is offset by formal services. The Netherlands, the Nordic countries, and Germany generally provide better statutory respite and direct payments than the UK does. The US relies more heavily on private long-term care insurance and Medicaid waivers, with significant geographical variation. Australia’s National Disability Insurance Scheme funds care for younger people with MS and other progressive conditions, but excludes those who acquire disability after age 65. The 2024 European Eurocare report found that across Europe, women provide more intense and prolonged care than men, with the gap narrowing—but not closing—in later life.
The OECD has repeatedly flagged informal carers as an unrecognised pillar of national health systems whose collapse would be unaffordable. No country has fully solved the problem; some have simply chosen to subsidise it more honestly.
What neurologists should actually do?
Carer health is not a soft add-on to MS, Parkinson’s, MND or dementia care—it is part of the clinical pathway, because carer collapse is one of the commonest reasons that home-based care fails, and the patient is admitted, placed, or worse. Practical steps:
Identify the principal carer at every annual review and document them in the record. Ask their name.
Ask, briefly, how the carer is doing. The single question “How are you coping?” picks up more than any poorly used structured tool.
Signpost actively to a Carer’s Assessment. Most carers do not know they are entitled to one.
Where intensity is escalating—night care, incontinence, falls, behavioural symptoms—escalate to social work, community neurology nurses, palliative care or specialist nurses early, not at crisis point.
Ask about safety. Seeing the patient and carer separately at least once a year creates the opportunity to disclose abuse in either direction.
Recognise that spousal carers of people with MS, dementia, or other neurodegenerative disease are themselves a high-risk cohort for cognitive decline, depression and premature mortality. Treat them as such.
Conclusion
The Xue et al. analysis confirms what carers, charities and a generation of social-care researchers have been saying: caring at moderate intensity, with autonomy and support, can be a good thing—it keeps the brain busy and the social network alive. Caring at high intensity, inside the home, for a partner with progressive disease, with no exit and no respite, is corrosive to mental health, physical health and cognition.
Spousal carers of people with MS and other neurodegenerative diseases sit on the wrong side of that line by definition. They are the human infrastructure on which we run our services, and we currently fund their support at a fraction of what we save by their unpaid labour. The case for adequately resourced replacement care, financial parity with the minimum wage for those caring 35+ hours, routine carer assessment, accessible psychological support, and active safeguarding is neither sentimental nor radical—it is the basic precondition for keeping people with progressive neurological disease at home for as long as they want to be there. We owe carers more than gratitude. We owe them a plan.
Questions
I would be interested in hearing your thoughts on the issues raised in this newsletter. How many of you are carers or are being cared for by a partner? Have you been given any support? Have you experienced any abuse? Have you discussed this with your HCP or social services?
I am aware that a large proportion of pwMS and their carers don’t want to discuss these issues, but unless we do, the problems they cause will not be addressed. Part of the holistic care of pwMS includes looking after their carers’ health. Do you agree?
Paper of interest
The influence of becoming a carer on cognitive function presents a complex picture. Variations in intensity, recipients and locations of caring may influence cognition differently. Using waves 2 to 10 (2004/2005 to 2021/2023) of the English Longitudinal Study of Ageing, we examined cognitive changes before and after transitioning into caring and explored whether these effects depend on care characteristics. We integrated the strengths of both ‘matching’ and ‘before and after’ methods. Using propensity score matching, we paired 2765 carers aged 50+ with 2765 non-carers. Using piecewise growth curve modelling, we modelled the changes in cognitive trajectories-memory and executive function-before and after transitioning into caring. Analyses also examined variations by care hours, location, recipient, number of people caring for, duration, sex and wealth. Carers were on average 60 years old, and 56% were women. We found that transition into lower-intensity caring responsibilities (5-9 hours/week), caring outside the household and caring for parents/parents-in-law exhibited a slower decline in executive function than non-carers. Those providing very intensive care (50+ hours/week), caring within the household or caring for a spouse/partner showed a more rapid decline. Memory changes followed a similar but much weaker pattern than for executive function. No evidence was found that sex or wealth moderated these effects. This suggests that the influence of caring on cognitive function is likely to be shaped by care-related characteristics. Our findings underscore the importance of preventing carer overload. While caring may help preserve cognitive function, excessive caring demands appear to accelerate cognitive decline.
Other key references
Xue B, McMunn A, Lacey R, et al. Association between becoming a carer in later life and changes in the trajectory of cognitive function: results from the English Longitudinal Study of Ageing. Age Ageing 2026;55:afag132.
Lacey RE, Xue B, Di Gessa G, et al. Mental and physical health changes around transitions into unpaid caregiving in the UK: a longitudinal, propensity score analysis. Lancet Public Health 2024;9:e16–25.
Carers UK. State of Caring 2024 / 2025; Facts About Carers (December 2024).
Office for National Statistics. Unpaid care expectancy and health outcomes of unpaid carers, England: April 2024.
Topcu G, et al. Informal carers’ experiences of caring for someone with multiple sclerosis: a photovoice investigation. Br J Health Psychol 2021;26:478–501.
Hutchison K, Ford H, et al. JAMA Neurology Viewpoint, 2026: Safeguarding people with multiple sclerosis from domestic violence.
Brimblecombe N, Fernández JL, Knapp M, et al. Review of the international evidence on support for unpaid carers. J Long Term Care 2018:25–40.
Livingston G, et al. Dementia prevention, intervention, and care: 2024 report of the Lancet standing Commission. Lancet 2024;404:572–628.
Accidental readers
If you have been forwarded this email and are not an MS-Selfie subscriber, please consider subscribing and helping MS-Selfie expand its resources for the broader MS community. MS-Selfie relies on subscriptions to fund its curated MS-Selfie microsite, MS-Selfie books, MS-Selfie Infocards, and other activities that extend beyond the MS-Selfie Substack newsletters.
Subscriptions and donations
MS-Selfie newsletters and access to the MS-Selfie microsite are free. In comparison, off-topic Q&A sessions are restricted to paying subscribers. Subscriptions are being used to run and maintain the MS Selfie microsite and other related activities, as I don’t have time to do this myself. You must be a paying subscriber 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).
Questions
If you have questions unrelated to the newsletters or podcasts, please email them to ms-selfie@giovannoni.net. Prof. G will try to answer them as quickly as possible.
Important Links
🖋 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 any problems, please tell your healthcare professional, who can help you.
How nice to be acknowledged. An interesting read. However to be asked by a neurologist how ‘we’ are doing- I can’t see that ever happening, even our own doctor doesn’t check on us, anti-depressants given and off you go… forever, left to get on with it. ‘Care’ outside the home is declining in this country and I can’t see it ever changing now. These organisations that are supposed to help are a nice thought but what can they actually do. And if you work forget any help, as usual.
Oh and did you know carers, once you reach 66 and start receiving your state pension your carers benefit stops - talk about adding insult to injury …..