‘Our lives are on hold’: Dementia diagnosis delays hit carers’ jobs, finances and family life - Alzheimer’s Society
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Research published today by Alzheimer's Society reveals that
families affected by dementia are being forced to put their lives
on hold by prolonged waits for a diagnosis. A survey of over 1,000
carers reveals nearly half of people (45%) waited more than six
months for a dementia diagnosis after first seeking help, with
devastating consequences for their work, finances and mental
wellbeing. The charity is calling for a new nationally-recognised
standard that would mean within...Request free trial
Research published today by Alzheimer's Society reveals that families affected by dementia are being forced to put their lives on hold by prolonged waits for a diagnosis. A survey of over 1,000 carers reveals nearly half of people (45%) waited more than six months for a dementia diagnosis after first seeking help, with devastating consequences for their work, finances and mental wellbeing. The charity is calling for a new nationally-recognised standard that would mean within 18 weeks of a GP referral, someone with dementia would receive an accurate diagnosis, together with a care plan and access to treatment (where appropriate). This ambition, or better, has already been met for all other major health conditions. The survey lays bare the toll diagnosis delays can take on families. Nearly half of carers (46%) said the wait had affected their work, while more than a third (35%) said it had made it harder to plan for the future. Three in ten reported sleepless nights or feeling as though life was on hold. Among working-age adults aged 35-44, over half (56%) reported an impact on work. Alongside the emotional strain, the survey highlights the growing financial pressures faced by families affected by dementia. More than a third (37%) said they had already used personal savings because of the financial impact of caring, while 36% had cut back on everyday spending. Similar proportions had reduced their working hours (34%) and spent less on their own health and wellbeing (33%). Yet the findings also underline the value of receiving a diagnosis. Nine in ten respondents (91%) caring for someone with a formal diagnosis said at least one aspect of life became easier afterwards, including understanding symptoms and behaviour, supporting the person living with dementia, accessing information or speaking to healthcare professionals. Michelle Dyson CB, CEO at Alzheimer's Society, said: "It is always better to know. A dementia diagnosis can bring answers, understanding and access to the support, treatment and care that can make a real difference to people's lives. But we know things can be so much better. Too many families spend months, and sometimes years, waiting for answers while their dementia progresses. It is like trying to plan a journey without knowing where you are going or when you will arrive. Behind every delayed diagnosis is a family living with uncertainty and trying to prepare for the future without the support they need. You would never accept someone being diagnosed with cancer and then left to work out the next steps on their own. Yet that is still the reality for too many people affected by dementia. Dementia does not wait, and neither should diagnosis. People living with dementia should receive an accurate diagnosis and, crucially, a care plan and access to appropriate treatment, within 18 weeks of referral. This would bring dementia in line with all other major health conditions and is not only achievable, it is the very least that people with dementia and their families deserve." Michael Fethon's dad, Jim, was diagnosed with Alzheimer's disease in 2022 at the age of 69. The family waited 18 months from their initial appointment with a GP to be diagnosed. Michael (35) said: We first noticed something wasn't right with Dad in 2020, but we had to wait 18 months for an official diagnosis. The GP initially put his symptoms down to anxiety and then we were passed from one team to another. The long wait and uncertainty that came with it placed so much pressure on my family. It caused so much extra stress and anxiety in what was already a really difficult time. Our lives were on hold and centered around appointments which also affected my work. I eventually had to leave my job as I had taken so much time off to take my dad to appointments around the country. When Dad was finally diagnosed with Alzheimer's disease, the news was delivered very casually over the phone. There was no offer of support. No follow-ups. Nothing. Just a couple of leaflets in the post and then we were on our own. I have family members who have had cancer and they had so much more support than we did for Dad's dementia. Families deserve better and I don't want to see anyone else go through what we did. The survey found that even after receiving a diagnosis, many carers felt they needed more support. When asked what would have helped most after diagnosis, respondents most commonly identified more follow-up from healthcare professionals, better information about treatment options, help accessing local services and clearer guidance on next steps. The findings come as Alzheimer's Society supporters and campaigners deliver an open letter to 10 Downing Street calling on Government to set a bold and ambitious plan for dementia, including faster access to diagnosis, treatment and support. Alzheimer's Society is encouraging anyone concerned about memory and thinking problems to seek help as early as possible, so they can access the advice, support and care that can make a vital difference. ENDS Notes to editors Research: Yonder data solutions conducted a survey with 1004 adults who care for someone with dementia between the 5th and 13th August 2026.
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