Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia

Study results suggest that the dementia first aid course is effective in changing the knowledge and attitude of dementia caregivers. It is hoped that this will also enhance their ability and skills of caring, which may in turn reduce caregivers’ sense of burden and wellbeing | British Journal of Medical Practitioners

Objective: Pilot evaluation of the impact of a ‘Dementia First Aid’ (DFA) training course on the knowledge and attitude of family caregivers of people with early dementia.

Methods: The participants in the study were primary family caregivers of people with dementia residing in northwest Hertfordshire. The 4-hour ‘Dementia First Aid’ course was delivered by NHS professionals. The training was organised once every second month from November 2015 till March 2017. The course provided overview of dementia and its impact on the person and their families, mindfulness based stress reduction, and the dementia first aid action plan for crises. The participants were asked to complete the Alzheimer’s disease Knowledge Scale (ADKS) before and after the completion of the course & complete carer burden scale (Zarit Burden Scale). Participants were asked to complete the scales after six months.

Results: The study sample comprised 65 people who had completed the DFA course. All completed pre- and post-training measures (ADK and Zarit burden scale), and a further 34 provided follow-up data approximately 6 months later. The scores were compared using a correlated group t-test. ADK scores improved significantly immediately after attending the course. For the subgroup that completed data at 6 months, the improvement in scores was sustained.

Conclusions: This ‘Dementia First Aid’ course appears to be effective in improving family caregiver’s knowledge of dementia and this knowledge was sustained at 6 months follow up.

Full article: Rahul Tomar et al. | Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia: findings of a pilot evaluation | British Journal of Medical Practitioners | 2019;12

Signs and symptoms of young onset dementia

Young Dementia Network have produced a downloadable resource for anyone who has concerns about signs and symptoms of young onset dementia.

  • Over 42,000 people are living with young onset dementia in the UK.
  • The early signs of dementia vary from person to person but often affect more than memory, particularly in a younger person.
  • Symptoms of young onset dementia can mirror, and be confused with, those of other conditions such as depression, menopause and stress. Dementia may be overlooked in a younger person.

list-2389219_1280This checklist is intended to help a person to be aware of the most common signs and  symptoms of young onset dementia and record changes and symptoms they may be experiencing. The information can be used to provide prompts for a conversation with a GP or health professional. It is not intended to be a diagnostic tool.

The leaflet can be accessed here

To find out more information about young onset dementia visit

Adapt films – providing support for people newly diagnosed

YoungDementia UK is launching three films to help educate and inform people about young onset dementia. We hope our Adapt films will be of particular use and interest to people who have been newly diagnosed and those who support them.

The first three films in the collection feature people affected by the condition discussing – Being a parent, Employment and keeping active and Who and how to tell:

Adapt – Being a parent features people affected by young onset dementia discussing how they shared the news of their diagnosis with their children, how they reacted and the impact the diagnosis has had on their family relationships.


Adapt – Who & how to tell features people affected by young onset dementia discussing how they shared the news of their diagnosis with family and friends.  They talk about how people reacted to the news and share advice for others in a similar situation.


Adapt – Employment & keeping active features people affected by young onset dementia discussing how the condition had an impact on their working lives and what they do now to keep active and engaged.

The films were funded by DEEP and the Shanly Foundation and are available for use by anyone who would like to share them, particularly at training courses, events and conferences.

Full detail at YoungDementia UK

Employment and Young Onset Dementia

Dementia UK have produced a new leaflet offering advice and information for people who are diagnosed with young onset dementia whilst in employment.

Image source:

People who are diagnosed with dementia when they are under 65 are described as having young onset dementia. This age group is more likely to be working at the time of diagnosis, and are more likely to have a partner who also works. This can have financial implications, as well as emotional ones. This leaflet from Dementia UK provides advice and information for people in employment at the time of diagnosis, as well as giving details of available support.

Leaflet available at Dementia UK

Employees with early onset dementia face discrimination at work

Employees with early onset dementia face a lack of workplace support and early dismissal, with those in lower-paid jobs most affected, according to new research published in the journal, Occupational Medicine | via People Management

A new study has found ‘no real will’ among organisations to make reasonable adjustments for workers diagnosed with early onset dementia.

The study which looked into the management of employees who developed dementia between the ages of 30 and 65 years found those living with early onset dementia were not being offered reasonable changes to their roles that could have allowed them to continue working.



The study found reports of poor management styles in dealing with dementia, low levels of colleague support and in some cases “no real will” within organisations to find individuals suitable jobs for their remaining skills level, with many being laid off from contracts or dismissed without consultation.

It said those in low paid or manual jobs were more likely to experience an “all or nothing” response to their diagnosis from their employers and often faced dismissal quicker than those in higher paid and non-manual jobs.

Full story at People Management

Full research article: Thomson, L. et al. | Managing employees with dementia: a systematic review | Occupational Medicine | published 27 November 2018

Young Dementia Network resources

The March issue of Young Dementia Network News is now available to read online

Image source:

Since the Young Dementia Network was launched 16 months ago, several resources have been developed at the request of Network members:

  • Care Pathway – a set of recommendations to guide policy makers, commissioners and practitioners in designing and delivering services.
  • Clinic Leaflet – a resource given to an individual on receiving a diagnosis of young onset dementia, so they are informed about national organisations they can contact for information and support.
  • GP Guide – this guide, endorsed by the Royal College of GPs, aims to support GPs in recognising the symptoms of young onset dementia.


Young onset dementia decision making guide for GPs

The Young Dementia Network has created a young onset decision making guide for GPs.

This guide aims to support GPs in identifying the most common signs and symptoms of young onset and rarer forms of dementia. It aims to help GPs identify ‘red flags’ which suggest referral to specialist diagnostic services may be required.

gp guide
Image source:

Key facts:

• Over 42,000 people are living with young onset dementia in the UK.

• It takes on average 4.4 years for younger people to be diagnosed, twice as long as older people, delaying access to treatment and support.

• Many younger people are misdiagnosed with depression, anxiety, stress, marital issues, menopause or personality disorder.

Download the guide by visiting Young Dementia UK

Full document: Diagnosing dementia in younger people:
A decision-making guide for GPs

Heavy drinking can increase the risk of developing dementia

Largest study of its kind finds alcohol use biggest risk factor for dementia | The Lancet Public Health | Story via ScienceDaily

drink-2736560_1920 (1)An observational study of over one million adults diagnosed with dementia in France has found that alcohol use disorders are the most important preventable risk factors for the onset of all types of dementia, especially early-onset dementia.

The study looked specifically at the effect of alcohol use disorders, and included people who had been diagnosed with mental and behavioural disorders or chronic diseases that were attributable to chronic harmful use of alcohol. Of the 57,000 cases of early-onset dementia (before the age of 65), the majority (57%) were related to chronic heavy drinking.

As a result of the strong association found in this study, the authors suggest that screening, brief interventions for heavy drinking, and treatment for alcohol use disorders should be implemented to reduce the alcohol-attributable burden of dementia.

Full story at ScienceDaily

Link to research: Schwarzinger, M |  Contribution of alcohol use disorders to the burden of dementia in France 2008–13: a nationwide retrospective cohort study | The Lancet Public Health | published online 20 February 2018


Age-appropriate services for people diagnosed with young onset dementia

Andrea Mayrhofer et al. Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review. Aging & Mental Health Published Online: 16 Jun 2017 

Background: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of ‘what works’ to inform service design and delivery.

Objective: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions.

Methods: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July–October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised.

Results: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery.

Conclusion: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care

Full document available here

“I’m Still Here”: Personhood and the Early-Onset Dementia Experience

The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood | Journal of Gerontological Nursing


Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I’m Still Here. Participants’ stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed.

Full reference: Sakamoto, M.L. et al. (2017) “I’m Still Here”: Personhood and the Early-Onset Dementia Experience. Journal of Gerontological Nursing. 43(5) pp. 12-17