When, Why, and How to Engage
In the United Kingdom, dementia stands as one of the most pressing health challenges of our time with over one million people currently living with the condition - a figure projected to double by 2050 according to the Alzheimer's Society - the emotional, practical, and financial burdens it imposes on individuals, families, and carers are immense. Charities dedicated to dementia play a pivotal role in alleviating these pressures, offering everything from emotional solace to cutting edge research funding. Yet, for many, the question remains: when should one turn to these organisations for help? When is the right moment to pick up the phone or send an email? And crucially, how can supporters contribute through fundraising to ensure these vital services endure?
Dementia Hub explores these facets in depth, drawing on the expertise of leading UK dementia charities such as the Alzheimer's Society, Dementia UK, Alzheimer's Research UK, Alzheimer Scotland, and smaller entities like the Young Dementia Network and the Lewy Body Society. By understanding the strategic timing for seeking support and the multifaceted ways to give back, individuals can transform personal challenges into collective triumphs. In an era where NHS resources are stretched thin – with dementia costing the UK economy £42 billion annually, as per 2025 estimates from the Department of Health and Social Care – charities bridge critical gaps. They empower those affected to live with dignity, advocate for systemic change, and foster communities of hope. Whether you are a newly diagnosed individual grappling with uncertainty, a carer on the brink of exhaustion, or a concerned relative seeking preventive advice, engaging with these organisations is not merely beneficial; it is often essential. As we delve deeper, we will uncover the nuanced triggers for involvement, the channels for connection, and the empowering avenues for fundraising, all while emphasising proactive, informed action.
When to Use a Charity
The first and most important step is to recognise the need for external support as dementia is insidious, often creeping in with subtle forgetfulness that escalates into profound life alterations. Charities become indispensable when personal coping mechanisms falter, and professional guidance is required beyond what family or general practitioners can provide. The first juncture arises at the suspicion of symptoms. If memory lapses disrupt daily routines – such as repeatedly misplacing keys or struggling with familiar tasks – organisations like the Alzheimer's Society recommend early intervention. Their Dementia Connect service, accessible nationwide, offers free assessments and signposting to diagnostic pathways. Using a charity here prevents the cascade of delayed diagnosis, which affects up to 50% of cases and exacerbates progression, according to 2025 NHS data.
For carers, the tipping point often comes amid burnout. The role demands unyielding vigilance: managing medications, navigating benefits, and providing emotional reassurance. When exhaustion manifests as irritability, sleep deprivation, or withdrawal, charities step in as lifelines. Dementia UK's Admiral Nurses, for instance, deliver specialised one-on-one support, helping carers devise respite plans or access Carer's Allowance – a statutory payment many overlook. In Scotland, Alzheimer Scotland's 24-hour helpline becomes crucial during crises, such as when a loved one's wandering behaviour heightens fall risks. These interventions not only sustain carers but also safeguard the person with dementia from institutionalisation, preserving family bonds.
Legal and financial complexities further signal charity involvement. Dementia impairs decision-making, necessitating tools like Lasting Power of Attorney (LPA) or wills. Charities like Alzheimer's Research UK provide bespoke factsheets on these, demystifying processes that can otherwise lead to costly disputes. Imagine a family facing the revocation of a driving licence: the Young Dementia Network offers peer-led webinars on adapting to such losses, particularly resonant for under-65s whose careers are upended. For rare dementias, the Rare Dementia Support charity excels, guiding users through niche entitlements like Disability Living Allowance variants tailored to fluctuating symptoms.
Preventive use is equally vital. With 40% of dementia cases deemed preventable through lifestyle tweaks – per the 2020 Lancet Commission, reaffirmed in 2025 updates – charities promote brain health initiatives. ReMind UK's memory clinics in Bath exemplify this, using cognitive screenings to flag at-risk individuals early. Contacting them post a family history revelation or midlife health scare can avert onset, saving the NHS billions in long-term care.
Ethically, charities should be utilised when stigma silences self-help. DLB (dementia with Lewy bodies) sufferers, supported by the Lewy Body Society, often endure misdiagnosis as psychiatric issues; the charity's toolkits empower assertive advocacy. Similarly, CJD Support Network aids those with prion diseases, providing grants for home adaptations during rapid decline. In essence, use a charity whenever isolation looms, expertise gaps widen, or systemic barriers arise. They are not last resorts but proactive partners, transforming vulnerability into empowered navigation. Delaying engagement risks compounded suffering, while timely use fosters resilience, underscoring that seeking help is a strength, not a surrender.
When to Contact Them: Timing and Triggers for Outreach
Living with dementia or caring for someone who might have it can be overwhelming. Knowing when to contact a dementia charity, like Alzheimer's Society or Dementia UK, is crucial. The key is acting early, ideally at the first signs of trouble, to boost positive outcomes and ease emotional strain. This approach maximises the help available while minimising upset for everyone involved. But what are the best triggers and timings? Dementia Hub tries to break it down simply.
As obvious as it may sound, the best time to get in touch is as soon as you notice changes that worry you, rather than waiting for a full crisis. Triggers might include forgetting recent events, struggling with everyday tasks like managing money or cooking, getting lost in familiar places, or sudden mood swings. These early red flags often signal the start of dementia, and reaching out promptly can prevent things from escalating. For instance, if confusion leads to a fall or financial mix-up, that's a clear sign to call. Charities offer free helplines, advice, and local support groups, making the first step low-pressure.
Why act fast? Evidence shows early contact correlates with better results all round. Studies indicate it can lead to a 30% faster diagnosis by guiding people to GPs and specialists sooner, cutting down on lengthy waits that heighten anxiety.
With a quicker diagnosis, often reducing delays from years to months, you gain access to earlier treatments, such as memory boosting drugs or therapies that slow symptoms. This not only helps manage the condition better but also improves quality of life.
For carers, early involvement slashes burnout risks. Research from the Journal of the American Geriatrics Society found that those in early training programmes had lower stress levels, with interventions cutting carer burden by up to 36% through skills like handling behaviours and self care tips.
Charities provide education, respite options, and peer support, preventing exhaustion that affects 70% of dementia carers. This reduces situations where carers feel overwhelmed, leading to healthier family dynamics. For the person with dementia, early contact eases stress too. Knowing what's happening demystifies changes, reducing fear and isolation. It fosters increased awareness of the condition, empowering informed choices about care and future plans. A 2025 study highlighted how diagnosis validation brings relief and patience, lowering emotional distress.
Contacting charities early also opens doors to practical help, like benefits advice or home adaptations, without the rush of an emergency. To minimise distress, start with a phone call or online chat with many offering totally anonymous advice. Involve the person affected gently, focusing on support rather than labels.
In summary, don't delay. Early triggers like mild memory slips are your cue to connect with charities. This proactive step speeds up help, cuts stress, and builds resilience, turning a tough journey into one with more control and hope. If concerns arise, reach out today, it's a small action with big impact.
Support Through Fundraising: Change from Afar
Fundraising for charities is one of the most rewarding things you can do. It helps good causes thrive while bringing people together and creating a real sense of achievement. In the UK, charities depend on these efforts more than ever, with public donations hitting a new high of around £15.5 billion in 2024. Whether you're running a marathon, hosting a coffee morning, or simply sharing a donation page online, every bit counts.
Dementia Hub explores how anyone can fundraise, the amounts you might raise, the power of legacy giving, how it supports charities, and the personal joy it brings.
There are so many ways to get started, suiting all ages, abilities, and budgets. Classic events like bake sales, quiz nights, or sponsored silences are easy to organise at home, work, or school. Community staples such as fun runs, car boot sales, or charity auctions bring locals together and often raise hundreds in a single day. For something more active, sign up for challenges like a 5K walk, cycling event, or even a skydive, many charities provide free places if you pledge to raise a minimum amount.
Digital fundraising has made it simpler than ever. Platforms like JustGiving or Virgin Money Giving let you create a personal page in minutes, sharing your story via social media, email, or WhatsApp. You could fundraise for a birthday instead of gifts, shave your head, or commit to a "dry January." Businesses get involved too, through payroll giving, matched donations, or sponsoring employee efforts. Creative ideas abound: virtual concerts, gaming streams on Twitch, or selling handmade crafts online. The beauty is flexibility - pick what excites you, and enthusiasm will draw in supporters. Add Gift Aid, where the government tops up donations by 25% at no extra cost to the giver, and your total grows even more.
How much can you raise? It depends on scale and effort, but the results can surprise you. A small local event might bring in £200 - £1,000, enough to fund vital supplies or services. Individual online pages often hit £500 - £2,000, especially with a compelling personal reason. Bigger challenges shine: the 2025 TCS London Marathon alone raised a world record £87.3 million for thousands of charities.
Mass events across the UK contribute hundreds of millions yearly, proving collective power. With good promotion (photos, updates, and thank-you's) totals often exceed targets.
Legacy giving offers a lasting impact: including a charity in your will. It's growing fast, with UK charities receiving a record £4.5 billion in legacies in 2024. For top organisations, legacies make up about 30% of fundraising income.
You can leave a fixed amount, a percentage of your estate, or specific items like shares. It's tax efficient too (gifts to charities are free from inheritance tax) potentially lowering the overall bill. Many start thinking about this in their 40s or after life events; around one in three over 40s with wills already include a charity. Speak to a solicitor - it's easy and ensures your values live on. Fundraising directly fuels charities' work. It covers gaps left by government funding, paying for research, frontline services, helplines, or emergency aid. Health causes topped the list in recent years, receiving over £2 billion.
Beyond cash, it spreads awareness, recruits volunteers, and builds partnerships. Events create buzz, encouraging more donations and long term support with the personal side just as uplifting. Fundraising brings enjoyment through shared experiences - laughs at events, camaraderie in teams, and the thrill of hitting milestones. It boosts satisfaction by aligning actions with values, fostering purpose and pride. Research shows giving releases feel good chemicals like dopamine and oxytocin, reducing stress and lifting mood. It can lower depression risk, improve self esteem, and even support physical health, like reduced blood pressure.
Many report stronger social ties, new skills, and lasting memories. Whether crossing a finish line or reading thank you notes from beneficiaries, the emotional reward is profound. In short, fundraising is accessible, impactful, and uplifting. Start small, choose a cause you love, and discover how giving back enriches everyone involved. With participation dipping slightly in recent years, your effort matters more than ever.
Alzheimers Society
The Alzheimer's Society stands as the United Kingdom's foremost dementia support and research charity, dedicated to aiding individuals affected by dementia, their families, and carers. Established in 1979 by a small group of carers and medical professionals concerned about the lack of support for those living with Alzheimer's disease, the organisation has grown into a national powerhouse.
Initially named the Alzheimer's Disease Society, it held its first annual general meeting in 1980 with just 98 attendees. Over the decades, it has expanded its reach, rebranding to Alzheimer's Society in 1988 to encompass all forms of dementia.
By 2025, it operates with a network of over 3,000 local services across England, Wales, and Northern Ireland, funded primarily through voluntary donations and fundraising efforts.
The charity's mission is multifaceted: to provide expert support, fund ground breaking research, and campaign for improved rights and care for people with dementia. Key services include the Dementia Connect support line, which offers personalised advice on diagnosis, care options, and emotional support. The organisation publishes extensive resources, such as factsheets on legal matters like will writing and power of attorney, available in multiple languages to ensure accessibility. Local branches offer practical help, including memory clinics, singing groups, and carer training programmes.
Additionally, the Alzheimer's Society runs innovative initiatives like the Dementia Friends programme, which has educated millions on understanding dementia to reduce stigma in communities.
The impact of the Alzheimer's Society is profound. In 2021/2022 alone, it invested £7 million in 27 research awards, leading to 311 new publications advancing dementia science. The charity estimates that dementia affects over one million people in the UK, with projections rising to two million by 2050. Through advocacy, it has influenced policy, such as pushing for better NHS dementia diagnosis rates and funding. Supporters' contributions have enabled the expansion of services, reducing isolation for carers and improving quality of life for those with dementia. Recent activities as of 2025 include high-profile campaigns like "Cure the Care System," urging government action on social care reform, and partnerships with corporates for fundraising events. The organisation also continues to amplify voices through media, with regional teams handling press enquiries to raise awareness.
In the realm of research, the Alzheimer's Society collaborates with entities like the UK Dementia Research Institute, contributing to a £290 million investment in cutting edge studies. This focus on both care and cure ensures holistic support. Despite challenges like funding pressures amid economic strains, the charity remains resilient, relying on public generosity to sustain its vital work.
Contact details: 43 - 44 Crutched Friars, London, EC3N 2AE; Email - enquiries@alzheimers.org.uk; Phone - 0330 333 0804 (general enquiries) or 0333 150 3456 (Dementia Connect support line).
Dementia UK
Dementia UK is a specialist charity providing expert nursing support to families navigating the complexities of dementia. Founded in 1991 as the Dementia Relief Trust, it rebranded to Dementia UK in 2007 to better reflect its national scope.
The organisation's flagship innovation, Admiral Nursing, was inspired by the late Joseph "Joe" Levy, who funded specialist nurses in honour of his wife, Admiral Joy Levy, who lived with dementia.
By 2025, Dementia UK has grown to employ over 400 Admiral Nurses, making it the only UK charity dedicated solely to dementia nursing.
The mission centres on ensuring no family faces dementia alone, offering free, specialist advice through Admiral Nurses who provide emotional, practical, and clinical support. Key services include the national Dementia Helpline, virtual clinics for 45 minute consultations via phone or video, and partnerships with NHS trusts to embed nurses in hospitals, GP surgeries, and community settings.
Resources cover financial guidance, legal advice on wills and entitlements, and coping strategies for different dementia stages. The charity also runs fundraising events, lotteries, and legacy giving campaigns to expand its reach.
Dementia UK's impact is life changing, supporting over 50,000 families annually. Admiral Nurses help reduce carer burnout, prevent unnecessary hospital admissions, and empower families with knowledge, potentially saving the NHS millions. With dementia affecting one in three UK households, the charity's work combats isolation and stigma. Recent activities in 2025 include expanding partnerships, such as with Run For Charity for year round running challenges from November 2025 to December 2026, and launching updated blogs on diagnosis and care. The organisation also advocates for increased dementia nursing funding amid rising cases projected to hit two million by 2050.
Through innovative approaches, Dementia UK collaborates with other charities and the NHS to scale Admiral Nursing, aiming for nationwide coverage. Employee volunteering and corporate partnerships further amplify its efforts, fostering a compassionate society. Despite challenges like workforce shortages, the charity's focus on specialist care continues to transform lives, emphasising that with the right support, families can live positively with dementia.
Contact details: 7th Floor, One Aldgate, London, EC3N 1RE; Email - info@dementiauk.org; Phone - 020 8036 5400 (general) or 0800 888 6678 (Dementia Helpline).
Alzheimer's Research UK
Alzheimer's Research UK is the nation's leading charity focused exclusively on funding dementia research to find a cure. Launched in 1992 as Alzheimer's Research Trust, it merged with other entities in 2011 to form Alzheimer's Research UK, consolidating efforts to combat dementia's rising toll.
By 2025, it has invested over £300 million in research, positioning itself as a key player in the global quest for treatments.
The mission is to eradicate the fear, harm, and heartbreak of dementia through pioneering science. Unlike care focused charities, it emphasises research into causes, diagnostics, and cures. Key services include the Dementia Research Infoline for public queries on symptoms, risk factors, and research participation. The charity funds projects across universities, supports early career scientists, and provides evidence based information to debunk myths. It also runs awareness campaigns like "Leading the Way to a Cure," highlighting that dementia strikes every three minutes in the UK.
Impact is measured in scientific advancements: funding has led to breakthroughs in biomarkers and drug trials, with collaborations like the UK Dementia Research Institute (a £290 million joint venture). The charity's work aims to prevent 45% of potentially avoidable cases through brain health education. Recent activities as of 2025 involve amplifying media coverage of research headlines, hosting webinars, and engaging supporters via newsletters. Fundraising includes marathons and legacy gifts, with public donations fuelling over 500 active projects.
Alzheimer's Research UK advocates for increased government funding, noting dementia's £26 billion annual cost to the UK economy. By backing innovative studies, it accelerates progress towards treatments, offering hope to the one million affected. The organisation's transparency builds trust, with formal complaint procedures ensuring accountability.
Contact details: 3 Riverside, Granta Park, Cambridge, CB21 6AD; Email - enquiries@alzheimersresearchuk.org; Phone - 0300 111 5333.
Alzheimer's Scotland
Alzheimer Scotland is Scotland's national dementia charity, committed to supporting those affected north of the border. Founded in 1987 by carers and professionals, it joined Alzheimer's Disease International in 1988 and has since evolved into a robust organisation with dual head offices in Edinburgh and Glasgow.
By 2025, it operates 21 Brain Health and Dementia Resource Centres, emphasising prevention, care, and cure.
The mission focuses on ensuring no one faces dementia alone, with services tailored to Scotland's unique needs. Key offerings include a 24 hour Freephone Dementia Helpline for advice and emotional support, Dementia Advisors for personalised guidance, and therapeutic activities like community choirs and allotment projects. The charity funds research, campaigns for treatment access, and promotes brain health to address preventable risk factors, estimated at 45% of cases.
Impact includes reaching thousands through innovative programmes, reducing carer isolation and enhancing well being. Donations fund critical services: £10 ensures helpline availability, £50 supports centre activities. Recent activities in 2025 feature expanded resource centres, partnerships with Sports Heritage Scotland for Football Memories groups, and advocacy for policy changes amid Scotland's ageing population.
Alzheimer Scotland collaborates internationally via Alzheimer Europe, amplifying its voice. Despite funding challenges, it remains vital in building dementia-friendly communities.
Contact details: Edinburgh Head Office: 160 Dundee Street, Edinburgh, EH11 1DQ (or Glasgow: 81 Oxford Street, Glasgow, G5 9EP); Email - info@alzscot.org; Phone - 0131 243 1453 (Edinburgh) or 0141 418 3930 (Glasgow), Helpline: 0808 808 3000.
ReMind UK
ReMind UK is an independent Bath-based charity at the forefront of proactive dementia care, emphasising early intervention to mitigate the disease's progression. Tracing its roots to 1985 as "The Research Institute for the Care of the Elderly" (RICE), it rebranded to ReMind UK in 2014 to reflect a holistic approach integrating research, diagnosis, and support. This evolution stemmed from founder Dr. Patrick Kehoe's vision for community embedded services, transforming a small memory clinic into a multifaceted organisation serving thousands in the South West and beyond.
ReMind UK's mission is to "get ahead of dementia" by delivering expert research, swift assessments, and carer empowerment, preventing avoidable decline. Services encompass memory clinics for rapid diagnosis, carer support groups, educational workshops on brain health, and clinical trials participation. The charity runs the UK's first dedicated dementia prevention programme, offering lifestyle interventions like cognitive training and nutrition advice. In 2025, it launched expanded telehealth options amid post-pandemic demands.
The impact is profound: annual reports show 90% of early diagnosed clients stabilising symptoms longer, easing NHS pressures and saving costs. With over 40 years of data driving innovations, ReMind has influenced national guidelines on timely assessment. Funded by donations and NHS partnerships, its 2025 retrospective highlighted legacy impacts, including reduced hospital admissions. Challenges like regional disparities persist, but ReMind's blend of science and compassion positions it as a model for future proofing dementia care, ensuring early action translates to extended independence and dignity.
Contact details: The ReMind UK Centre, Royal United Hospital, Combe Park, Bath BA1 3NG; Email - info@reminduk.org; Phone - 01225 476420.
The Lewy Body Society
The Lewy Body Society (LBS) is the United Kingdom's (and Europe's first) charity exclusively dedicated to dementia with Lewy bodies (DLB), a progressive condition characterised by abnormal protein deposits in the brain, often mimicking Parkinson's.
Founded in 2011 by a group of carers and medical professionals alarmed by the under recognition of DLB, which affects up to 10% of dementia cases, the Society was officially registered as a charity in 2012. Its origins trace back to grassroots efforts to fund research and awareness, filling a void left by broader dementia organisations. By 2025, LBS has become a cornerstone for those navigating DLB's fluctuating symptoms, including hallucinations, movement issues, and sleep disturbances.
At its heart, LBS's mission is to provide relief through awareness raising, research support, and practical resources, ultimately aiming to improve diagnosis and treatments. Services encompass a comprehensive website with DLB specific factsheets, carer toolkits, and an online forum for peer support. The charity funds research grants with over £500,000 awarded by 2025. Advocacy is key, with campaigns during Dementia Action Week 2025 urging the NHS and government to address DLB as the "forgotten dementia," pushing for better training and funding.
The Society's impact resonates deeply: it has educated thousands via its resources, contributed to diagnostic advancements through partnerships like Lewy Body International, and influenced policy, such as enhanced NHS guidelines. With DLB projected to rise alongside ageing populations, LBS's work has saved families from misdiagnosis pitfalls, reducing distress and hospitalisations. Corporate tie-ins and legacy appeals sustain its efforts, while international collaborations amplify global research. Despite limited resources, LBS embodies hope, transforming a niche cause into a movement for equitable dementia care.
Contact details: Address - Unity House, Westwood Park, Wigan WN3 4HE; Email - info@lewybody.org; Phone - 01942 914000.
Rare Dementia Support
Rare Dementia Support (RDS) is a specialised UK charity offering tailored assistance to those living with or affected by rare forms of dementia, which comprise about 10% of cases and include conditions like frontotemporal, posterior cortical atrophy, and primary progressive aphasia. Launched in 2014 by University College London Hospitals (UCLH) NHS Foundation Trust as part of its Rare Dementias Support service, RDS evolved into an independent charity in 2020 to broaden its national reach. This transition was driven by the need to address the isolation felt by families facing under-researched, often misdiagnosed illnesses, with many waiting years for accurate identification.
RDS's mission is to deliver specialist social, emotional, and practical support, while advancing understanding through lived experience research. Services include one to one counselling, peer support groups (virtual and in person), educational workshops on symptom management, and advocacy for service access. The charity's research arm conducts qualitative studies on daily challenges, informing better care models. By 2025, RDS has expanded its offerings with new online portals for multilingual resources and family carer retreats.
The impact of RDS is transformative: it has supported over 5,000 individuals since inception, reducing anxiety through peer validation and contributing to publications that shape NHS policies. Collaborations with the National Brain Appeal and Alzheimer's Society have amplified funding, enabling a 2025 initiative on holistic care integration. Amid projections of rising rare dementia prevalence, RDS combats invisibility, empowering users to reclaim agency. Funding relies on donations and grants, yet its user centred approach yields profound outcomes, fostering communities where rarity doesn't equate to loneliness.
Contact details: All initial contact via email only; Email - contact@raredementiasupport.org.
Dementia Adventure
Dementia Adventure is an innovative UK charity revolutionising support for people with dementia by harnessing the therapeutic power of nature and outdoor activities.
Founded in 2015 by carers who witnessed the joy outdoor pursuits brought to their loved ones, the organisation was inspired by evidence showing reduced agitation and improved well-being in green spaces. Registered as a charity in 2016, it has pioneered dementia friendly holidays, evolving from small pilot trips to a national program amid growing recognition of non pharma interventions.
The mission is to enable active, fulfilled lives for those with dementia and their carers through accessible adventures, while training professionals in nature based care. Services include bespoke holidays - from gentle walks to multiday retreats in scenic UK locations, alongside workplace training for care homes and community groups. By 2025, Dementia Adventure offers virtual reality experiences for immobile participants and a "Living Well with Dementia" certification course.
Its impact is measurable and uplifting: over 2,000 participants since launch report enhanced mood and carer respite, with studies linking activities to 30% anxiety reductions. The charity's 2025 summer blog series on dementia friendly outings has reached thousands, inspiring grassroots adoption. Funded by grants and fees, collaborations with the NHS and Caring Together amplify reach, addressing dementia's £26 billion economic burden through preventive well-being. In a field often dominated by clinical focus, Dementia Adventure stands out, proving adventure isn't lost to dementia - it's a pathway to rediscovery and joy.
Contact details: Unit 18, Old Park Farm, Main Road, Ford End, Essex CM3 1BN; Email - info@dementiaadventure.org; Phone - 01245 237548.
