Caring For Someone With Young Onset Dementia

Caring for someone with young onset dementia can present unique challenges. If your loved one has been diagnosed with early onset dementia, you may have found yourself unexpectedly becoming their carer. 

In this article, we’ll explain a little about early onset dementia, how you can support a loved one, and where you can find help for yourself.

The terms young onset dementia and early onset dementia are both used to describe the condition. You may also sometimes hear it called working-age dementia

young onset dementia

What is early onset dementia?

Young onset dementia is the name for types of dementia that started before age 65. 

Dementia is a loss of cognitive function. People with dementia often struggle with memory loss, communication problems, and issues with reasoning and planning. It can also cause mood swings and personality changes.

It’s a progressive condition, which means that it gets worse over time. 

Dementia itself isn’t just one disease. It’s an umbrella term used for the symptoms, but it can be caused by a number of different conditions, including:

  • Alzheimer’s disease
  • Frontotemporal dementia
  • Vascular dementia
  • Dementia with Lewy bodies

Most people with dementia are older. However, young onset dementia symptoms usually develop between the ages of 30 and 65. More than 70,000 people in the UK are currently living with young onset dementia.

Young onset dementia symptoms

Young onset dementia symptoms are likely to be different from the expected memory loss. 

Instead, someone with young onset dementia might experience:

  • Emotional changes, such as becoming anxious, depressed, or withdrawn
  • Behavioural changes, such as acting aggressive, impulsive, or irrational
  • Communication problems, such as forgetting words, slurring their speech, or problems with reading or writing
  • Problems with balance or movement
  • Problems with spatial awareness or vision, including hallucinations

Memory problems will often come later. By that point, you or your loved one may already be aware that something is wrong. 

As dementia is a progressive condition, young onset dementia symptoms will increase over time. Symptoms may be worsened by illnesses such as urinary tract infections (also called UTIs or water infections) or changes such as staying in hospital, alterations in routine, or bereavements.

Everyone’s experience of a condition is different. If someone isn’t experiencing “typical” young onset dementia symptoms but you still have concerns, encourage them to talk to their GP.

Getting a diagnosis of early onset dementia

If you’re concerned about possible young onset dementia symptoms in a relative, encourage them to talk to their GP as soon as possible. 

Getting a diagnosis of any form of dementia can take time. Because dementia in young people is rare, and because young onset dementia symptoms are unusual, it can take longer to diagnose – on average, someone under 65 waits 4.4 years for a diagnosis.  

If your loved one is feeling confused or nervous about the appointment, you or another family member could go with them to their appointment. 

A GP will ask about symptoms, and try to rule out other causes. Your relative may have some memory or cognition tests, blood tests and a brain scan. They may also be referred to a specialist for the final diagnosis.

What causes early onset dementia?

We don’t know why some people develop dementia. 

Some people are more at risk for developing young onset dementia. Your loved one may be more at risk if they have:

  • Down’s syndrome or other learning disabilities
  • A brain injury or previous head trauma
  • A history of alcohol or drug addiction
  • Diabetes
  • High blood pressure or cholesterol

Some types of dementia are inherited, or caused by conditions that develop before the age of 65, such as Huntington’s disease. 

Frontotemporal dementia and posterior cortical atrophy are two types of dementia that are commonly diagnosed before 65. 

How serious is early onset dementia?

Unfortunately, there isn’t currently a cure for dementia. 

Treatments focus on relieving symptoms where possible. Your loved one may be prescribed medication to help with anxiety or depression, for example. They may also be referred to talk therapy or cognitive stimulation therapy. 

Insurance for Dementia Carers

Surewise Carers & PA Insurance

Surewise offers carers insurance to cover:

  • Self-Employed Carers & PAs
  • Individual Employers
  • Carer & PA Businesses
  • Direct Payments Arranged Care

Caring for someone with young onset dementia

You may find yourself becoming your loved one’s carer. You might not realise, at first, that you are a carer. 

However, if you’re providing a lot of help, such as doing their shopping, taking them to appointments, or helping with their personal care, you’re acting as their carer. Even if you don’t live with the person, you could still be their carer.

Being a carer for someone with early onset dementia can be challenging. Depending on their needs, you may have to provide emotional support, give practical help, or liaise with healthcare professionals. 

Providing practical help

It can be difficult to know where to start. You know your loved one best, and, especially if you live together, you’ll have seen the areas where they struggle. 

Every person with dementia has different needs. However, we would suggest supporting your loved one by:

  • Taking care of tasks that they find stressful, such as going to the supermarket or arranging doctor’s appointments
  • Making sure that they eat and drink – this may mean providing more snacks than full meals, or ensuring that they always have a water bottle available
  • Encouraging exercise
  • Helping with personal hygiene if necessary

If you feel as though you need more support, these courses for dementia carers and additional training options can be a great place to start. Even just finding a dementia carer support group can be a lifeline.

Young onset dementia and children

Someone with early onset dementia may still have young children. If you and your loved one share children together, you’ll need to talk to them about the diagnosis.

How you do this will depend on their age. It’s often better to explain the condition to them early on, rather than waiting until they’ve noticed symptoms and become worried. The Alzheimer’s Society has advice for talking to children and young people about dementia

Children may need a lot of reassurance. They might have questions about what will happen next. It may help them to talk to someone unrelated about dementia. Their school or GP may be able to refer them to a counsellor or therapist. 

Early onset dementia and work

Your loved one may have to give up work earlier than they had originally planned. If you provide a lot of care for your loved one, you may also find that you decide to give up work, or cut back on your hours. Read up on benefits for dementia carers if you go down this route.

When your loved one is diagnosed with young onset dementia, they should tell their employer. They may be able to make adjustments so that they can continue working. However, in some roles, this won’t be possible – for example, if they drive for a living. 

Giving up work can be a difficult decision to make. For a lot of people, their career is part of their identity. And, of course, there are financial implications. 

Your loved one may be able to claim their workplace pension if they retire due to ill-health. They may also be eligible for some benefits, such as Personal Independence Payments, Universal Credit, or Employment and Support Allowance.

Dementia and driving

Your loved one must tell the DVLA and their car insurance if they have received a diagnosis of dementia. They may be asked for a note from their doctor, and may have to take a driving assessment. Following that, they may no longer be allowed to drive. 

You or your loved one may have already noticed that their driving has changed. They may have decided to give up driving themselves. 

When they give up driving, your role as a carer may increase as you need to take them places.

Professional care for people with young onset dementia

As your loved one’s dementia progresses, you may no longer be able to continue supporting them alone. 

You can arrange a care needs assessment with your local authority. From there, the local authority will tell you and your loved one what financial support they will offer. Your loved one may receive direct payments, which they can use to fund home care services, or the local authority may pay towards a care home. Alternatively, you or your loved one can pay from savings or income of your own. 

Home care for people with young onset dementia

Professional care for young onset dementia doesn’t have to mean moving into a care home. 

Home care can be a great choice for people with dementia. It avoids the stress of moving home, and it allows your loved one to continue living surrounded by family, pets, and familiar possessions. 

You can arrange home care for a loved one by contacting a care agency, or by hiring a personal assistant.

A care worker or personal assistant can help your loved one with a variety of tasks, including:

  • Personal care, such as washing, dressing, or going to the toilet
  • Some medical support, including changing a stoma bag or help with medication
  • Meal preparation and feeding
  • Domestic help, such as cleaning or laundry

Even if your loved one doesn’t need practical help, they may benefit from companionship care – someone to spend time with them, whether that’s accompanying them on outings or just spending time together at home. 

Dementia care homes for younger people

Lots of people who have a diagnosis of dementia live in a care home. However, because dementia in young people is rare, it can be difficult to find an appropriate care home. 

Many care homes support people over 65. If your loved one is much younger, or has additional needs such as a learning disability, finding a suitable care home can be hard. 

Dementia UK has advice for choosing a care home for someone with young onset dementia. 

Looking after yourself

Whether you’re supporting a spouse, parent, sibling, child, or other loved one, early onset dementia is probably an unexpected change in your lives together. It’s not likely to be something that you planned for, and you’re probably feeling the loss of plans you once had. 

If early onset dementia has changed your loved one’s personality and behaviour, it’s important to take care of yourself and anyone else in your home. Young onset dementia symptoms can include becoming aggressive, and keeping yourself and others safe should be the priority. This may mean finding a care home for your loved one earlier than anticipated, or making other arrangements for others in the home. 

Adjusting to a changing relationship

Young onset dementia will change your relationship with your loved one. It can be difficult to come to terms with this. 

If you’ve been thrown into a caring role, you may feel like you are no longer a partner, you’re just a carer. Arranging professional care or respite care can go some way towards alleviating this. If possible, try and take time with your loved one to enjoy hobbies or meals together.

Respite care

If you look after someone with young onset dementia, there may be times that you need a break. This might be for a few hours, so you can go to an appointment, see a friend, or go to work. Or it might be for longer, if you’re ill, have a planned hospitalisation, or want to go on holiday. 

Respite care is where your loved one is looked after by someone else for a short while. This could happen at home, in a day centre, or in a care home. 

Caring for a loved one is a physically and emotionally taxing job, so respite care is important. 

You may be able to get support with the costs of respite care.  

Support for carers

If you’re a carer, you may be entitled to Carer’s Allowance. This is a benefit available to some people who provide care for more than 35 hours a week.  

You might find support groups helpful. While local dementia support groups may cater more towards older people and their carers, you may find young onset dementia support groups online or through your loved one’s healthcare team. 

Many carers also benefit from having someone impartial to talk to. Your GP may be able to refer you for talk therapy, if you feel that this would help.