This page is part of PrimeCarers' guide to dementia care. It is written for the person who has been diagnosed and for the husband, wife or partner beside them.
The short answer
- The diagnosis can take longer because nobody expects itEarly changes in behaviour, language or vision can be put down to stress, depression or the menopause. Keep a written record and ask for a memory service referral.
- Take advice before anybody leaves workThe Equality Act 2010 protects people with progressive conditions such as dementia, and employers have a duty to make reasonable adjustments.
- You must tell the DVLAGOV.UK says you must tell the DVLA if you have dementia. Not reporting a condition that affects driving can mean a fine of up to £1,000.
- The benefit at this age is PIPAttendance Allowance starts at State Pension age. PIP pays £76.70 to £194.60 a week in 2026/27, and the mortgage lender should hear from you early.
- Build support around what the person enjoysA paid support worker can go with them to the gym, the football or the pub, which a day centre planned for people in their eighties may not offer.
Checked against GOV.UK, the Equality Act 2010, the Children Act 1989, the NHS, Dementia UK, Acas and Citizens Advice, September 2026. Prices are what carers on PrimeCarers charge, with our fee included.
What is different
What changes when dementia starts before 65
The illness is the same kind of illness as in an older person. What is different is the life it lands in. Dementia UK notes that a younger person with dementia may still be working, may have dependent children and a mortgage, and may be caring for their own parents as well.
What is different before 65
The first thing to do
Who to contact
Getting the diagnosis
What is different before 65
Memory loss is less likely to be the first sign. Changes in behaviour, language or vision can be put down to stress, depression or the menopause at first.
The first thing to do
Write down what has changed and when, with examples. Once other causes are ruled out, ask the GP for a referral to a memory service.
Who to contact
The GP, then the memory service. Some people also see a neurologist or a psychiatrist.
Work
What is different before 65
The person may still be working, and colleagues sometimes notice the changes before anyone at home does.
The first thing to do
Take advice before anyone resigns. Ask about occupational health and reasonable adjustments under the Equality Act.
Who to contact
The employer or HR, occupational health, a union representative, and Access to Work.
Driving
What is different before 65
A driving licence may be part of the job, and part of how the family gets through the week.
The first thing to do
Tell the DVLA about the diagnosis. The law requires it, and there is a fine of up to £1,000 for not reporting a condition that affects driving.
Who to contact
The DVLA, online or on form CG1. Check what your car insurance says about medical conditions too.
Money and the mortgage
What is different before 65
Attendance Allowance is only for people over State Pension age, so the benefit to claim is PIP. An income may stop while the mortgage is still running.
The first thing to do
Claim PIP. Find every insurance and pension policy the household holds. Ring the mortgage lender before a payment is missed.
Who to contact
The DWP, the insurers and pension schemes named in your paperwork, and the lender.
Children at home
What is different before 65
There may be children at school or college, and a teenager may start doing some of the caring without anyone deciding that they should.
The first thing to do
Tell them in words that fit their age and tell the school. If a child is helping to care, ask the council for a young carer's needs assessment.
Who to contact
The school or college, and the council's children's services.
Support day to day
What is different before 65
Dementia UK says most services are not designed for people of working age.
The first thing to do
Keep going with the things the person enjoys. A paid support worker can go with them to the gym, the football or the pub.
Who to contact
The council for a needs assessment, young onset groups near you, and carers you choose yourselves.
Drawn from Dementia UK, the NHS, GOV.UK and the Equality Act 2010, September 2026. Each row is covered in more detail further down this page.
The six rows above are the parts of life a diagnosis at this age reaches, and they do not all need attention in the same week. If you are reading this soon after the diagnosis, the two with legal duties attached are driving, where the DVLA must be told, and work, where an employer's duties begin once they know. Money comes next, because a PIP claim takes time to decide and a mortgage lender has more ways to help before a payment is missed than after.
Alongside all of this, make a Lasting Power of Attorney while the person can still decide who they trust to act for them. It covers the bank accounts and the house, and a second one covers health and care decisions. Lasting power of attorney and dementia explains both and why the timing matters.
The diagnosis
Why the diagnosis can take longer before 65
The Alzheimer's Society says that younger people are more likely to have one of the less common types of dementia, and that memory loss is less likely to be the first thing anyone notices. When the first sign is a change in behaviour or a problem with words, the people around the person, including doctors, may look for another explanation first.
Changes in behaviour and personality
Common in frontotemporal dementia
Problems with language
Frontotemporal dementia, and some Alzheimer's
Problems with vision and judging space
Posterior cortical atrophy, a form of Alzheimer's
Memory, planning and organising
Alzheimer's disease and others
Dementia UK lists what else the GP will want to rule out first: depression, anxiety or stress, an underactive thyroid, a lack of vitamin B12, the perimenopause and menopause, an infection, or a side effect of medication. That is sensible medicine, and several of those can be treated. The difficulty is that each one is far more common at 55 than dementia is, so the search can stop there. Dementia UK also notes that because many health professionals lack specialist knowledge of young onset dementia, a person may see several specialists before the diagnosis is made.
The type of dementia matters for what comes next, because the symptoms that appear first shape what help is useful. The different types of dementia explains each of the main types and how the diagnosis is reached, and what is different about caring for someone with frontotemporal dementia covers one of the less common types that younger people are more likely to have.
Work and driving
Work, the Equality Act, and telling the DVLA
A diagnosis does not mean the job has to end that week, and leaving in a hurry can cost money that careful timing would have kept. The steps below are the order worth taking them in.
- 1
Take advice before anybody resigns
FirstDementia UK suggests talking to your employer, HR, occupational health and a union representative before deciding to leave. Resigning may mean giving up sick pay, an ill-health pension or an insurance payment that depends on still being employed. - 2
Decide whether to tell the employer, and how
When you are readyDementia UK says that for most jobs you do not legally have to tell your employer, though some roles, such as those involving driving or dangerous machinery, do require it. Acas explains that an employer must make reasonable adjustments once they know, or could reasonably be expected to know, that someone is disabled. - 3
Ask for occupational health and reasonable adjustments
Once they knowAdjustments might mean tasks given one at a time, a quieter place to work, regular breaks, working from home, fewer hours or a change of role. GOV.UK lists phased returns and flexible or part-time hours among its examples. - 4
Apply to Access to Work
AlongsideAccess to Work is a government grant towards practical help at work, such as equipment, a support worker or travel costs. GOV.UK says it does not affect other benefits and does not have to be paid back. - 5
If work has to stop, ask about ill-health retirement
LaterGOV.UK says a personal or workplace pension can usually be taken from 55, and earlier if you are retiring because of ill health, depending on the scheme's rules. Ask the scheme what medical evidence it needs.
The legal protection comes from the Equality Act 2010. It treats someone as disabled if an impairment has a substantial, long-term effect on their normal daily activities. Dementia is a progressive condition, and Schedule 1 of the Act says a person with a progressive condition counts as disabled once it has some effect on daily activities and is likely to have a substantial one later, even if the effect is mild at first. GOV.UK sets out reasonable adjustments for disabled workers, and Dementia UK has guidance on employment and young onset dementia.
If you are the partner and you work too, you have rights of your own, including the right to ask for flexible working and a week of unpaid Carer's Leave. Balancing work with caring sets them out.
Money and the mortgage
Money when an income stops and the mortgage does not
Money can be the hardest part, because the income that keeps the house going can stop while the mortgage, the bills and the children's costs carry on. Work through the list below in the first few months, while there is still time to plan.
| What it is | What to do | |
|---|---|---|
| Personal Independence Payment (PIP) | For people under State Pension age. Daily living is £76.70 or £114.60 a week and mobility £30.30 or £80.00 in 2026/27. Not means-tested. | Claim by phone on 0800 917 2222. Describe the worst days as well as the good ones. |
| Carer's Allowance | £86.45 a week for the partner if they care for 35 hours or more and the person gets PIP daily living. | Check the earnings limit first: about £204 a week after deductions. |
| Critical illness cover | A policy that pays a lump sum if the holder is diagnosed with a condition the policy lists. | Find the policy and read whether dementia is listed and what evidence it asks for. |
| Income protection | A policy that pays part of your income if illness stops you working. Some come through an employer. | Ask HR whether there is a group scheme before anyone leaves the job. |
| Mortgage payment protection | Insurance taken out with a mortgage that may cover payments during illness. | Check your paperwork, or ask the lender whether you have it. |
| Workplace and personal pensions | Can pay out before 55 on ill-health grounds, if the scheme's rules allow it. | Ask each scheme about ill-health retirement before leaving work. |
| Universal Credit or New Style ESA | Benefits for people whose work has been limited or stopped by illness. | Check what you can claim on GOV.UK if an income stops. |
Personal Independence Payment (PIP)
- What it is
- For people under State Pension age. Daily living is £76.70 or £114.60 a week and mobility £30.30 or £80.00 in 2026/27. Not means-tested.
- What to do
- Claim by phone on 0800 917 2222. Describe the worst days as well as the good ones.
Carer's Allowance
- What it is
- £86.45 a week for the partner if they care for 35 hours or more and the person gets PIP daily living.
- What to do
- Check the earnings limit first: about £204 a week after deductions.
Critical illness cover
- What it is
- A policy that pays a lump sum if the holder is diagnosed with a condition the policy lists.
- What to do
- Find the policy and read whether dementia is listed and what evidence it asks for.
Income protection
- What it is
- A policy that pays part of your income if illness stops you working. Some come through an employer.
- What to do
- Ask HR whether there is a group scheme before anyone leaves the job.
Mortgage payment protection
- What it is
- Insurance taken out with a mortgage that may cover payments during illness.
- What to do
- Check your paperwork, or ask the lender whether you have it.
Workplace and personal pensions
- What it is
- Can pay out before 55 on ill-health grounds, if the scheme's rules allow it.
- What to do
- Ask each scheme about ill-health retirement before leaving work.
Universal Credit or New Style ESA
- What it is
- Benefits for people whose work has been limited or stopped by illness.
- What to do
- Check what you can claim on GOV.UK if an income stops.
Benefit figures are 2026/27 rates from GOV.UK. PrimeCarers does not give financial advice, and the terms of any policy are set by the insurer or scheme that holds it.
PIP is the benefit to claim, not Attendance Allowance, because GOV.UK says you must have reached State Pension age to get Attendance Allowance. PIP is scored on how the condition affects daily life rather than on the diagnosis. The mobility part includes planning and following a journey, which covers somebody who can walk well but gets lost or distressed on a route they used to know. PIP and care at home goes through the questions, the scoring and what to do if the decision is wrong. An award of the daily living part can also open the door to Carer's Allowance for the partner, and Carer's Allowance explained covers the earnings limit that catches working carers out.
The mortgageSection titled The%20mortgage
Ring the lender early, before a payment is missed. Citizens Advice says lenders have to follow rules to make sure you are treated fairly, and that a lender may agree to extend the mortgage term, switch to interest-only for a while, allow a payment break, or add arrears to the balance. Each of those costs something over the life of the loan, so ask what it adds before you agree. Citizens Advice on dealing with mortgage debts goes through the options. If you end up on a qualifying benefit such as Universal Credit, Support for Mortgage Interest can help with the interest, but it is a loan that is repaid when the home is sold or transferred.
Dementia UK has a guide to finance and young onset dementia covering benefits and the legal side. When care starts to cost money, the cost of care for dementia shows what each kind of care costs at home.
Children at home
Children at home, including a teenager who is helping to care
Children may notice that something has changed before anyone explains it, and an explanation that fits their age can be less frightening than silence. Dementia UK publishes guidance on supporting children and adolescents when a parent has young onset dementia.
Tell them what is happening
In words that fit their age
Tell the school or college
So someone there knows
Watch for a teenager taking on too much
Caring can grow without anyone noticing
Ask for a young carer's needs assessment
The council must assess
Dementia UK's page on supporting children and adolescents when a parent has young onset dementia has more on how to explain the illness at different ages. The young carer's needs assessment is set out in section 17ZA of the Children Act 1989, and asking for one is not a complaint about anybody's parenting. It is a way of making sure a child's own needs are seen.
The partner who is holding all of this together is a carer too, and caring for a husband, wife or partner covers what that does to a marriage. Ask the council for a carer's assessment for yourself, and look at respite for dementia when you need time away that is planned rather than forced on you.
Support that fits
Support that fits somebody in their forties, fifties or sixties
Dementia UK says most services are not designed for people of working age. A day centre or a memory café may be welcoming and still feel wrong to somebody of 54 who used to play five-a-side on Thursdays. A good place to start is support that keeps the person doing what they already enjoy.
- 1
Write down what the person enjoys and wants to keep
TogetherThe gym, a season ticket, a walk with the dog, the pub quiz, a choir, the allotment, time with grandchildren. Ask the person first. This list is the plan, and it matters more than a timetable of tasks. - 2
Look at carers who could do those things
Free to searchRead what each carer says about their experience on their profile, and ask about the things on your list when you message them. Each carer sets their own rate, and it is on their profile before you speak to anyone. - 3
Meet two or three together
The person and the carerThe person with dementia should meet the carer and have a say. Ask how they would spend an afternoon at the football or the gym, and what they would do if the person became anxious or wanted to come home early. - 4
Start with one regular outing
The first few weeksA fixed afternoon each week with the same carer gives the person something to look forward to and gives the partner time back. Add more once it is working.
Most carers on PrimeCarers who offer company and outings charge £15 to £20 an hour, and personal care visits are £18 to £25 an hour, both with our fee included. Agencies charge £28 to £35 an hour. Tickets, entry fees and any mileage are agreed with the carer before you go, and mileage is only payable if it has been agreed in advance in writing. Can carers take you out? covers what an outing involves. When you are ready, search for carers near you and compare their rates and read their profiles.
If the council assesses the person as needing care and support, you can ask for the money as a direct payment and use it to choose support yourselves. GOV.UK says direct payments let you buy the services you need instead of taking them from the council. Ask for the care needs assessment in the same month as the PIP claim, because both take time.
For peer support, the Young Dementia Network, hosted by Dementia UK, is an online community for everyone living with or working with young onset dementia. Dementia UK also keeps a searchable list of young onset groups and services across the UK, and its Admiral Nurses are specialist dementia nurses who give advice to families.
Questions
Questions families ask about young-onset dementia
When the symptoms start before the age of 65. It is also called early-onset or working-age dementia. The Alzheimer's Society says younger people are more likely to have one of the less common types, such as frontotemporal dementia, and less likely to have memory loss as the first sign.
For most jobs you do not have to, according to Dementia UK, though some roles, including those that involve driving or dangerous machinery, do require it. An employer's duty to make reasonable adjustments applies once they know, or could reasonably be expected to know, that you are disabled, so telling them is usually what opens the door to support. Take advice from HR, occupational health or a union representative first if you are unsure.
Not necessarily straight away, but you must tell the DVLA. GOV.UK says you can be fined up to £1,000 if you do not tell it about a condition that affects your driving. The DVLA may contact your doctor, arrange an examination or ask for a driving assessment, and GOV.UK says you can usually keep driving while it considers your case.
No. Attendance Allowance is only for people who have reached State Pension age. The benefit to claim before then is Personal Independence Payment, which pays £76.70 to £194.60 a week in 2026/27 depending on the award. PIP and care at home explains how to claim.
It depends on the policy. Find the policy documents and check whether dementia or Alzheimer's disease is among the conditions it lists, and what diagnosis and evidence it requires. Policies taken out through an employer or with a mortgage are easy to forget, so check with HR and the lender as well.
Whatever keeps the person living their own life: going with them to the gym, the football or the pub, helping them keep up a hobby, getting them to appointments, or keeping them company while the partner is at work. Carers on PrimeCarers who offer company and outings charge £15 to £20 an hour with our fee included. You choose the carer and agree the hours with them directly.
Yes. Under section 17ZA of the Children Act 1989 the council must assess a young carer under 18 if it appears they may need support, or if they or a parent ask. Tell the school as well. Dementia UK has guidance on supporting children and adolescents when a parent has young onset dementia.