What is Young Onset Dementia (YOD)
Dementia is an umbrella term for a range of progressive conditions that affect the brain and lead to changes in thinking, behaviour and functioning. Young onset dementia (YOD) is any form of dementia that develops before the age of 65. The risk of developing some types of dementia increases with age. As a result, there are more people within older age groups who develop symptoms and receive a diagnosis of dementia. This may explain why dementia is frequently but mistakenly considered a condition of old age. In fact, albeit more rarely, all types of dementia can develop in adults under the age of 65. Indeed, some rarer types of dementia have a typical age of onset in people who are in their 50s and 60s. In some cases dementia can occur in people in their 30s or 40s.
The most common forms of dementia in younger people are Alzheimer’s disease, Vascular dementia, Frontotemporal dementia and Lewy body dementia. Around 20% of younger people with dementia have a rarer form of the condition, such as Posterior Cortical Atrophy (PCA) or Primary Progressive Aphasia (PPA). There is a wide array of rare conditions that can lead to dementia in younger people, including rare genetic disorders.
Over 70,000 people are living with YOD in the UK. This is 7.5% of people with a diagnosis of dementia in the UK. There are estimated to be 92 people per 100,000 of the population diagnosed with dementia between ages 30-64. In Scotland, this means that there are about 5,300 with a YOD. For further information on YOD definition and prevalence you can visit the Young Dementia Network website.
https://www.youngdementianetwork.org/about-young-onset-dementia
What are the symptoms of dementia?
In people under the age of 65, the initial symptoms of YOD are not always recognised. Initially, symptoms may be attributed for some time to other causes, such as menopause, anxiety, depression, stress or relationship issues. This can result in delays in getting a diagnosis.
Dementia is often associated with memory problems, such as forgetting recent conversations or upcoming appointments. However, the early symptoms of some types of dementia commonly seen in younger people (e.g. Posterior Cortical Atrophy or Frontotemporal Dementia) may not be memory loss. Symptoms differ depending on the type of dementia a person has, and which parts of the brain are affected. A good working knowledge of common and rare types of dementia can be very helpful in correctly identifying the initial symptoms, offering relevant assessments, and reaching an accurate and timely diagnosis of YOD.
As mentioned before, symptoms depend on the type of dementia and which parts of the brain it affects. As the conditions that lead to dementia are progressive, symptoms worsen over time. The exact symptoms that a person experiences, and the rate of progression over time, differs from person to person. Symptoms typically impact on a person’s ability to complete their daily activities (e.g. remembering commitments, shopping, use of technology), functioning at work, and relationships. Often colleagues, family and friends can be the first people to notice early symptoms. Sometimes the person with dementia might not have awareness or insight into their difficulties.
If you wish to learn more, then it can be very helpful to know what type of dementia you or your loved one has been diagnosed with. Learning about the condition, symptoms, and typical progression can help you to better understand difficulties and how to meet any needs. You can follow the links below to access information leaflets on different types of dementia.
https://www.alzscot.org/what-is-dementia/types-of-dementia
https://www.alzheimers.org.uk/about-dementia/types-dementia?gad_source=1&gad_campaignid=1982211334
The need for Specialist YOD Services
The needs of people with YOD and their families often differ from the needs of people who develop dementia later in life. Younger people are more likely to:
- Be in work, and therefore need support to continue working and/or help when employment ends
- Have financial commitments (e.g., mortgage) and other caring commitments, including children and/or elderly relatives
- Experience difficulties obtaining a YOD diagnosis
- Have a rarer type of dementia
- Need emotional support to cope with the diagnosis
A recent landmark study (The Angela Project) has shown that care improves for people with YOD where there are specialist services. If interested, you can learn more about the study and findings by following the link below.
https://www.youngdementianetwork.org/research-evidence/the-angela-project
The NHS Greater Glasgow and Clyde (GG&C) YOD Service
The NHS GG&C YOD Service is a health-board wide service for people under the age of 65 years, their families and carers. This service covers Glasgow City, East Dunbartonshire, West Dunbartonshire, Renfrewshire, East Renfrewshire, and Inverclyde. The YOD Service office base is at Gartnavel Royal Hospital, but all patient contact is arranged at a location suitable for the person with the diagnosis and their family.
The YOD service has 2 Clinical Psychologists, a specialist Community Psychiatric Nurse (CPN), and administrative support. The service works in partnership with Adult and Older People’s Community Mental Health Teams (CMHTs), providing consultation, training, and interventions. For any questions about the service, please do not hesitate to email the YOD Service inbox below:
ggc.youngonset.dementiaservice@nhs.scot
Who can refer to the GG&C YOD Service
The YOD service accepts referrals for Consultation from Adult Community Mental Health Teams (CMHTs) during the period of assessment. The YOD service works closely with Adult CMHTs offering consultation and support during the period of assessment for suspected YOD. When a diagnosis is made by an Adult CMHT or by Neurology, the YOD service offers guidance on the care pathway ensuring that there is appropriate follow-up and Post Diagnostic Support.
Once a diagnosis has been confirmed, patients should be referred to their locality Older People’s Community Mental Health Teams (OPCMHTs). This is where patients can access specialist dementia support, including Post Diagnostic Support.The YOD service accepts referrals from OPCMHTs for direct input to the person with the diagnosis of YOD and their families, where specialist input is required.
The YOD service is unable to accept self-referrals. However, if you or a loved one have a diagnosis of YOD and you live in Greater Glasgow and Clyde, please do not hesitate to contact us at the YOD inbox address below, if you are unsure about what supports may be available in your local area.
ggc.youngonset.dementiaservice@nhs.scot
What does the YOD Service Offer
The type of support provided depends on the individual needs of the person with dementia and their family. This can include:
- Training on the assessment, diagnosis, and care of YOD
- Consultation/support to clinicians with assessment of suspected YOD
- Adjustment to diagnosis for patients and their family
- Psychoeducation about dementia, including rarer types
- Individual and group interventions for people with dementia
- Individual and group psychological interventions for carers
- Psychological interventions to reduce Stress and Distress in dementia
I’m worried that I am (or my loved one is) experiencing some of the symptoms listed above
If you are worried about your memory or any other area of cognition, in the first instance contact your GP and arrange an appointment to discuss your observations and your concerns. It is helpful to tell your GP when the difficulties started; whether they have stayed the same, improved, or worsened; and to give a list of examples. If possible, attend your GP appointment with someone who knows you well, as they can also share (with your permission) any changes they have noticed.
Many factors that are not dementia can affect cognition (e.g. vitamin/iron deficiency, poorly controlled diabetes, low mood, sleep disorders) and some of those factors can be reversible. Your GP will take a detailed history of your difficulties and typically order a routine blood test and any other indicated tests to exclude reversible causes. They may also complete a brief pen and paper test to assess your cognition. Once the GP has completed their assessment, if no clear cause has been identified and there is ongoing concern that your difficulties could be early symptoms of a type of dementia, then your GP may refer you on to other services for more detailed investigations. This might include a referral to your local Community Mental Health Team or to a Neurology Service.
I have (or my loved one has) recently been diagnosed with dementia
The clinician who made and shared with you the diagnosis of YOD (usually a Psychiatrist, a Neurologist or a Clinical Psychologist) will refer you for follow-up care to your local Older People’s Community Mental Health Team (OPCMHT). In Greater Glasgow and Clyde, Older People’s teams offer support and care to people with YOD and their families. Although people with YOD will by definition be under the age of 65 at the time of diagnosis, care comes from local Older People’s team. These teams have clinicians with expertise in supporting people with dementia and their families.
OPCMHTs are multidisciplinary teams of Psychiatrists, Nurses, Psychologists, Occupational Therapists and Post Diagnostic Link Workers. After you have received a YOD diagnosis, you should expect to receive an appointment from your local Older People’s team irrespective of your age. Please, see link below for a comprehensive list of OPCMHTs in Greater Glasgow and Clyde along with contact numbers.
Post Diagnostic Support for people with a diagnosis of Young Onset Dementia
Everyone in Scotland who has been given a diagnosis of dementia is entitled to a minimum of one year Post Diagnostic Support. This support is offered by Post Diagnostic Link Workers, a specialist role within OPCMHTs. Shortly after your care is accepted by your local Older People’s team, you will be allocated a Post Diagnostic Link worker. Occasionally, there may be a little wait, but typically after a few weeks a Post Diagnostic Link Worker will be in contact with you by phone or letter to arrange to meet you.
The aims of Post Diagnostic Support is to help you and your family to:
- Understand the illness and manage your symptoms
- Be supported to keep up your community connections and make new ones
- Have the chance to meet other people with dementia and their families
- Plan for future decision-making
- Plan for your future support
What other supports are available for people with YOD and their families?
What other supports are available for people with YOD and their families?
Alzheimer Scotland
Alzheimer Scotland is a charity dedicated to supporting people and families with dementia. You can visit the website for useful links to local supports https://www.alzscot.org and/or contact the 24/7 Helpline 0808 808 3000.
You can arrange to meet an Alzheimer Scotland Dementia Advisor, who can also provide you with information on local groups and activities. Their service operates between 9am – 5pm Monday to Friday. You can contact their confidential service by telephone 0300 373 5774 or email advice@alzscot.org
In Glasgow City, Alzheimer Scotland run a weekly YOD Dementia café. You and your loved ones are more than welcome to attend for a relaxed discussion and contact with other people with dementia and their families. For information on the YOD Dementia café, please contact Alzheimer Scotland or visit the link below.
https://www.glasgowhelps.org/services/glasgow-dementia-resource-centre-alzheimer-scotland-3
Carers Centres
If you are supporting a loved one with a diagnosis of YOD, it can be helpful to contact your local Carer Centre. Carer Centres offer practical support, advice and information for carers. You can access Carer Centres in your local area either by phone, drop-in, or outreach surgeries.
Carer Centres can provide you with:
- Information and advice on things like benefits, respite and support services, advocacy, support under the Carers Act, aids and adaptions
- Emotional support – you can talk with trained staff, volunteers and other carers who understand your situation
- Community consultation – by giving carers a unified voice to have an impact on local, regional and national decision-making
- Time out from caring, breaks, relaxation therapies, and the opportunity to enjoy your own social life
To find out where your local Carer Centre is, please visit the link below. The webpage includes a comprehensive list of Carer Centres for all areas in Scotland along with contact details. You do not need a referral to a Carer Centre. You can drop-in during open hours, call, or self-refer.
TIDE (Together in Dementia Everyday)
TIDE is a charity supporting family and carers of people with a diagnosis of dementia. There are free resources available on their website and links to join a monthly YOD carers’ café. This is an online meeting for family members/carers of people with a YOD diagnosis. No referral is required. If this is of interest to you, please follow the link below for further information.
https://www.tide.uk.net/events
Rare Dementia Support
Rare Dementia Support is a charity that offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. Their aim is for all people with, at risk of, or supporting someone with a rare form of dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions.
Rare Dementia Support have on their website videos of patients and family members providing valuable insights and information on rare types of dementia, such as Fronto-temporal dementia, Posterior Cortical Atrophy and Lewy Body Dementia. In addition, the charity organises online monthly meetings for people with these rare types of dementia and family members, who wish to meet others and learn more about their condition. These are free to access and people can self-refer to attend.
https://www.raredementiasupport.org
Social Care for people with YOD and their families and carers
Support for the person with the diagnosis
If you or your loved one need support to function day to day and you wish to make suitable arrangements for input from services/carers, then please contact your local Social Work service and make a referral for an assessment of their needs.
For Glasgow City Council, see links below:
https://glasgowcity.hscp.scot/news/new-support-enquiry-form
https://www.glasgow.gov.uk/carers
Support for people offering unpaid care
If you are offering routine care to a loved one, family, partner or friend of a person with a YOD diagnosis, please note that you are entitled to a separate assessment of your needs as a carer, which is referred to as a ‘Carer Assessment’.
https://www.carersuk.org/help-and-advice/practical-support/carers-assessment
I want to learn more about YOD care
If you wish learn more about YOD care and national support networks, then see below links to some key organisations. Feel free to visit and make direct contact if you wish:
- to learn more about YOD care in Scotland and the UK
- to share your views
- to advocate for the rights of people with YOD and their families
The Young Dementia Network https://www.youngdementianetwork.org
The UK Network of Dementia Voices https://www.dementiavoices.org.uk/
Useful information
This information has been prepared to provide information for people with dementia, and for their carers.
Partners: