- Dementia Carers Together is a campaign led by Mail Force in partnership with Alzheimer’s Society, offering essential support to unpaid caregivers of dementia patients across the UK.
- To contribute, head to the Dementia Carers Together fundraising page.
Over the extended periods—sometimes stretching into years—that I’ve observed caregivers supporting their loved ones with dementia, a consistent pattern of transformation emerges.
The fatigue is genuine, as sleepless nights and unending days wear down even the strongest individuals. Some caregivers end up falling ill from the strain.
As both a nurse and a professor specializing in dementia studies, I’ve witnessed this repeatedly. I understand how these experiences can feel among the most difficult and emotionally draining phases of a person’s life.
While the decline is unavoidable, caring for someone with dementia should not come at the cost of one’s own health and wellbeing. Currently, around 2.5 million people in the UK offer some level of care to those living with dementia. For each, the sorrow of gradually losing a beloved person to this progressive brain condition—where memories, abilities, and even personality are slowly stripped away—is deeply profound.
Caregivers face serious impacts on their mental and physical health, strain on relationships, disruptions to family life, and challenges in their professional lives. They often endure isolation, extreme tiredness, and an unrelenting load of duties that can feel insurmountable.
The Mail on Sunday agrees with me that this situation must be addressed. This weekend, a significant new initiative from Mail, called Dementia Carers Together, begins—a mission to provide crucial emotional and practical support to tens of thousands of struggling unpaid carers.
Alzheimer’s Society and Alzheimer Scotland, backed by the Mail and the Mail Force charity, are working toward raising at least £1 million to fund nationwide courses designed to help caregivers access the financial and medical support they may qualify for, as well as guidance on managing evolving needs of their loved ones within the health and social care system.
These sessions will be instrumental in strengthening emotional strength and equipping carers with practical tools to safeguard their mental wellbeing, and to recognize when and how to seek assistance.
This cause holds deep personal significance for me. I’ve spent my professional life advocating for and supporting dementia carers. Having lost my father to dementia, I understand firsthand just how challenging this journey can be for families.
As the Dementia Carers Together initiative rightly emphasizes, caring should never come at the cost of your own wellbeing.
It’s essential that both carers and their loved ones maintain as much normalcy as possible while living with the condition.
Though it might seem difficult to believe at times, there are still moments of genuine joy to be found—moments that grow increasingly precious as dementia progresses.
Drawing from years of experience working with families and individuals affected by dementia, I’ve seen that certain actions can significantly reduce stress and enhance happiness and resilience for both carers and their loved ones facing future challenges.
Prioritize your own health above all else
In aviation, there’s a well-known rule: secure your own oxygen mask before assisting others. This principle is equally crucial for those providing care.
Too frequently, carers end up unwell—or worse—because they put their own health on hold to support someone else. They miss routine doctor visits, skip recommended vaccinations, forget their medication, or overlook early warning signs until problems escalate. It’s easy to neglect yourself when you’re overwhelmed and mentally drained. But if you fall sick, the whole caregiving structure can fall apart. Your loved one would undoubtedly want you to look after your health, even if they’re unable to express it right now.
Starting with a nutritious diet and consistent hydration helps. Ensure your meals include plenty of fruits, vegetables, and protein. If time is short, snacks are perfectly acceptable—keeping a bowl of fruit handy can be a practical solution—and always have a water bottle nearby to sip throughout the day.
Never avoid GP appointments; respond promptly to new symptoms, and take prescribed medications as directed.
Acknowledge that you are a carer—this recognition is an essential first step in self-care.
It may seem self-evident, but many people have shared with me that they still see themselves primarily as a wife, daughter, husband, or son—rather than recognising their role as a carer.
As a result, they often delay seeking help or fail to realise the support available until the situation becomes overwhelming. Acknowledge your role as a carer early on, and reach out to a local carers’ organisation—they can make a significant difference.
Health and social care professionals are excellent sources of guidance and assistance, but they might not fully grasp your personal experience. That’s where local organisations—typically run by charities—come in, offering a comprehensive, one-stop resource tailored to your needs.
The resources available to you may differ based on your location. They can assist in identifying the support and benefits you might qualify for—ranging from respite care and financial assistance to disabled parking permits—and guide you through completing the necessary paperwork.
They can also provide advice on handling behaviours linked to dementia, such as avoiding arguments or corrections, and how to respond calmly to agitation or confusion. These strategies help prevent distressing episodes that could worsen if mismanaged.
Dementia Carers Together will enhance these services by introducing new training courses, enabling more caregivers to gain essential knowledge.
Reach out to Alzheimer’s Society at 0333 150 3456 or visit alzheimers.org.uk. In Scotland, contact Alzheimer Scotland via 0808 808 3000 or go to alzscot.org.
You can locate nearby carers’ groups through Carers UK at carersuk.org/help-and-advice/get-support/local-support.
Establish a local support network
Caregiving can feel deeply isolating. Even those closest to you may struggle to grasp the reality of your experience—the unpredictable changes in the person’s condition, challenging behaviours, constant demands, and the emotional toll it takes.
Yet isolation harms your mental health. Other dementia carers are the ones who truly understand, having faced similar challenges, and can provide empathy and companionship.
They can offer valuable insights by sharing how they’ve not only survived but thrived by securing the right kind of help and support. Many have already faced obstacles you may encounter and can warn you about potential pitfalls, helping you avoid costly mistakes.
This guidance is also incredibly useful for identifying which local services are genuinely beneficial and worth pursuing.
Dementia cafes—also referred to as memory cafes—provide a welcoming space to connect with other caregivers, often while supporting the person you care for. There are also dedicated carer support groups where you can speak more freely and honestly. To locate one, contact your GP practice, your local council’s adult social services team, or the memory clinic where your loved one received their diagnosis. Your GP might also refer you to a social prescribing link worker who can assist in finding nearby community groups and activities.
Alzheimer’s Society offers an online directory: enter your postcode at alzheimers.org.uk/dementiadirectory to discover dementia cafes, support groups, and other relevant services. Alternatively, call the Dementia Support Line at 0333 150 3456.
If leaving home is challenging, the charity runs a free online Dementia Support Forum where carers can pose questions, exchange stories, and receive practical advice. Don’t forget to check with your local council either—you’re entitled to request a free carer’s assessment, which can uncover the support you need, including chances to meet other carers and access respite care.
It’s essential to seek legal advice as early as possible.
Doing so can prevent unnecessary stress, reduce administrative burdens, and save money later on. Everyone should consider setting up a Lasting Power of Attorney, allowing a trusted individual to manage financial matters or make health and care decisions if you become unable to do so yourself.
The person with dementia must still have mental capacity when establishing this arrangement. Crucially, a dementia diagnosis doesn’t automatically mean they’ve lost that capacity, but it’s vital to act quickly.
If they’re no longer able to make decisions, in England you’d need to apply to the Court of Protection to become their deputy—a process that’s both time-consuming and costly. Each UK nation operates under its own distinct system.
Getting legal guidance early and planning ahead can prevent hasty choices, delays in obtaining funds for care, and avoid expensive court procedures.
In England and Wales, you can establish a Lasting Power of Attorney via gov.uk/power-of-attorney, often without needing to hire a solicitor.
The registration fee is £92 per document, though financial assistance is available for those on low incomes. For support, contact the Office of the Public Guardian at 0300 456 0300. If you require a solicitor, use solicitors.lawsociety.org.uk. In Scotland, visit mygov.scot/power-of-attorney for information.
Registration can take a long time, so it’s best to complete it as early as possible—even if you won’t use it for years.
Make sure you get sufficient rest.
Sleep may seem like an indulgence when you’re caring for someone who becomes upset or confused overnight.
Still, aim to maintain a consistent sleep routine—not only for your own wellbeing but also for the stability of your loved one.
This involves sticking to consistent sleep schedules, steering clear of caffeine after midday (consider switching from regular tea to decaffeinated versions), and ensuring your sleeping environment is as dark, silent, and cool as possible.
If racing thoughts keep you awake after a long, stressful day, try journaling your thoughts—writing them down may help release emotions and calm your mind.
Make a note of the positive moments from your day. This can serve as a reminder that the person you’re supporting is well cared for—and that you’re doing an excellent job, even when it feels overwhelming.
Reach out to your GP if difficulties persist; therapy could be beneficial, or medication for either you or your loved one might improve sleep quality without interruptions. Exposure to natural daylight early in the day can also be nearly as effective as medication.
Keeping physically active will benefit both of you.
Physical activity can uplift your mood, ease stress, and enhance sleep. If gyms or group classes aren’t feasible, explore online workouts or videos you can do at home. Simple activities like walking or gardening maintain fitness and help you unwind.
If you can engage in these activities together, it’s even more helpful—it supports your loved one’s strength and movement, and may also improve their sleep.
For home-based exercise videos, including low-impact routines suitable for older adults or those with limited mobility, visit nhs.uk/better-health/get-active. The NHS also offers seated exercise options at nhs.uk/live-well/exercise/strength-and-flexibility-exercises/sitting-exercises.
If none of the above options work, simply step outside for a brief period and take several deep breaths—exposure to natural light, particularly in the morning, can recalibrate your internal body clock (especially useful after a disrupted night) and improve your sleep quality later on.
Recognize your personal limits before they’re exceeded
It’s completely normal to experience negative emotions toward the person you’re caring for. Pay attention to your emotional state and try to identify the root cause—could it be exhaustion? Are you feeling resentful because you’re overextending yourself?
Being able to detect early signs of strain before hitting a breaking point is crucial to preventing burnout.
Warning signs that you may be nearing this threshold include heightened anxiety, irritability, persistent sadness or hopelessness, difficulty sleeping, or intense negative emotions toward the person in your care. Reach out to your GP, social services, or trusted friends for support.
Don’t hesitate to seek assistance
Allowing others to help doesn’t mean you’ve failed in your role—it’s a vital step in ensuring your caregiving duties remain manageable over time.
Keep in mind that no one can handle everything alone. I’ve witnessed countless individuals feel guilty about accepting support—try to let go of that guilt.
If you’re feeling swamped, creating a to-do list can bring clarity: identify tasks that need immediate attention, those that can be delayed, and responsibilities others can assist with.
When friends offer help because they see you’re struggling, don’t hesitate to request specific, actionable support. This could mean asking someone to collect prescriptions, do grocery shopping, or stay with your loved one for a few hours so you can rest.
A friend of mine arranges for someone to stay overnight at her home weekly, allowing her to check into a budget hotel for a full night’s uninterrupted sleep. Remember, no one is expected to manage everything alone—don’t push yourself beyond your limits.
Humming a tune can lift your spirits and energise your day.
While caring for someone with dementia can be deeply challenging, joy still exists in simple moments. Prioritising your own well-being isn’t selfish—make space for your personal passions and pastimes.
Carve out time for shared activities you once enjoyed together. Music holds special power; studies show that songs from ages 16 to 20 often trigger a ‘reminiscence bump’, reviving vivid memories from youth. Sharing these tunes may improve mood, encourage conversation, or even lead to a joyful sing-along.
Alzheimer’s Society hosts Singing For The Brain sessions for individuals with dementia and their caregivers. Locate a group near you at alzheimers.org.uk/singingforthebrain.
The BBC also offers a free resource called Music Memories at musicmemories.bbcrewind.co.uk, where you can rediscover iconic tracks and sounds from various decades to inspire meaningful memories.
Board games, jigsaw puzzles, vintage photos, and moments of shared laughter can add meaningful joy to your everyday life. Be sure to explore community-based dementia-friendly events, such as walking groups, swimming sessions, art workshops, dance classes, or yoga.
Ensure you have a clear emergency plan in place
This is essential, not optional. It must clearly outline the steps to take if you’re unable to assist, including contact details for family, friends, and neighbours who should be notified in an emergency, as well as backup caregivers (discuss these arrangements with them beforehand).
The plan should include your loved one’s diagnosis, current medications, treatment regimen, and contact information for all regular health and social care providers. Maintain a printed copy and share it with healthcare staff and close family members.
Many local councils provide free carers’ emergency cards—keep one in your wallet. These cards inform emergency responders that someone relies on you and offer a quick way to activate your pre-arranged emergency care strategy.
Stay connected with your family and establish mutual understanding about future care needs as your relative’s dementia advances. Keeping everyone informed helps ensure consistency and peace of mind.
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