Caring for Someone With Early-Onset Dementia
Early-Onset Dementia
Early-onset dementia, also known as young-onset dementia, is a diagnosis given when dementia symptoms present before the age of 65.
Early-onset dementia, also known as young-onset dementia, is a diagnosis given when dementia symptoms present before the age of 65
Although this can happen from around the age of 30, early-onset dementia is most common in those over the age of 50.
It’s estimated that nearly 8% of people with dementia in the UK have young onset dementia, which is approximately 70,800 people. Of these people, around 33% have Alzheimer’s disease and 20% have vascular dementia.
The average time taken for those under 65 to receive a diagnosis is around four years, whereas it typically takes just over two years for someone aged 65+ to be diagnosed.
Signs and Symptoms of Early-Onset Dementia
The symptoms of dementia are similar, regardless of what age the condition presents.
Common symptoms include:
- Memory loss
- Difficulty with tasks
- Withdrawal from others
- Confusion
- Lack of judgement
- Speech problems
- Changes to behaviour and personality
Early-Onset Dementia Diagnosis
This type of dementia can be harder to diagnose, often due to the age of the person. This can also be attributed in part to a lack of awareness, meaning healthcare professionals are more likely to consider other conditions first.
Patients may be misdiagnosed with to a range of other issues, such as stress, depression, nutritional deficiencies and even side effects from medications.
However, once finally suspected, various tests, assessments and examinations can be used to confirm a diagnosis.
Challenges of Caring for Someone With Early-Onset Dementia
Caring for anyone with dementia can be a challenge, but early-onset dementia can pose unique difficulties.
A person diagnosed with dementia earlier in life might be raising children, be in full-time employment and have big financial commitments, such as a mortgage.
As the caregiver, this might mean having to take on extra responsibilities, such as childcare, or finding solutions to financial difficulties when the person with dementia can no longer work.
As soon as your loved one is diagnosed with early-onset dementia, it’s wise to create a Lasting Power of Attorney agreement. This document will give a named person, most likely you as the carer, the legal right to make decisions on behalf of the person with dementia.
This is also a sensible time for the person with dementia to write a will if they haven’t already done so.
Caring for a Spouse with Dementia
If your partner has been diagnosed with early-onset dementia, this can naturally be a difficult situation to come to terms with.
You’ll likely experience a range of emotions as you contemplate a different future to the one you had always imagined. It’s normal to experience loneliness and a sense of loss, even though your spouse is still with you. This is likely to escalate as your caregiving responsibilities increase.
It can be extremely valuable in the long run to have the big conversations early on. This involves communicating your feelings and fears to each other and putting a plan in place for how you’ll both adapt to the diagnosis.
Where possible, continue with the activities that you normally enjoy doing together. As time goes on, you can find new activities to do together that suit your partner’s capabilities.
Caring for a Spouse with Dementia When You Have Children
Caring for a spouse with dementia while also raising a family can be hard for you and for your children.
It's helpful to share age-appropriate information with your children about your spouse’s condition. This will help them to understand differences in behaviour and changes to regular routines.
It’s also a good idea to contact the school to let them know what’s going on at home and to find support groups or counselling sessions that your children can attend.
Additionally, finding activities that you can enjoy as a family will allow you all to continue making memories together.
Financial Considerations and Support
A person with dementia may be able to continue in their employment for a short while, but will inevitably have to leave their job as their condition progresses. As the spouse of someone with dementia, this can leave you as the sole earner, which becomes even more challenging as your care responsibilities increase.
Early retirement can be a good option for some and there are also several welfare benefits to explore.
There are a number of benefits that a person with dementia could be eligible for and different benefits for you as the carer. The Turn2us benefits calculator will show you what you’re entitled to.
As a carer, you can become an appointee in order to apply for and manage the benefits of your loved one.
Once you become an appointee for someone, their benefits will be paid directly to you, which can make managing your finances a little smoother. Dementia can cause behaviour changes, which might sometimes lead to impulsive spending. So having a greater degree of control over your shared money can help to prevent this.
What Support is Available?
The majority of support services for people with dementia are aimed at the needs of older people, such as those above the age of 65. This can make it harder to access relevant support when you’re caring for someone with young-onset dementia.
The specific services that are available to you will depend on where you live. It’s a good idea to ask your GP about this and you can also search online.
View a list of organisations that you can contact for guidance.
It might be the case that your loved one with dementia needs more specialised care than you can provide. In this case, a care home might become the most appropriate solution.
Unfortunately, there are very few care homes in the UK that specialise in younger patients with dementia, so it may be complicated to find a suitable solution. The Young Dementia Network can be a helpful place for information on this
