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

Adolescents’ experiences and perceptions of dementia

Nicolas Farina et al. | Adolescents’ experiences and perceptions of dementia | Aging & Mental Health | published online: 11 May 2019

Objectives: There is a lack of understanding about how adolescents perceive dementia, and what their dementia related experiences are. Without such information, it is hard to make a case for the need to raise awareness of dementia in adolescents, and the best strategies to achieve this.

Methods: In a cohort of 901 adolescents (aged 13–18) from the South East of England, we explored what the experiences and perceptions of dementia were using a series of questionnaires. Descriptive data of individual items were reported, comparing differences between genders.

Results: The adolescents within this study tended to have positive or neutral attitudes towards dementia, though there was evidence that a proportion of adolescents had misconceptions or held negative attitudes (e.g. 28.5% of adolescents disagreed with the statement ‘In general, I have positive attitudes about people with dementia’). We also identified that the adolescents had a range of experiences of dementia including providing some form of care for someone with dementia (23.2%), though most had indirect contact with dementia through TV and movies (77.3%), or adverts (80.2%). Females nearly always had better attitudes towards dementia and had significantly more contact with dementia.

Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age group.

Full detail at Aging & Mental Health

Reducing the risk of dementia

Risk reduction of cognitive decline and dementia | The World Health Organisation

who risk
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These WHO guidelines provide evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia.  Worldwide, around 50 million people have dementia and, with one new case every three seconds, the number of people with dementia is set to triple by 2050. The increasing numbers of people with dementia, its significant social and economic impact and lack of curative treatment, make it imperative for countries to focus on reducing modifiable risk factors for dementia.

These guidelines are intended as a tool for health care providers, governments, policy-makers and other
stakeholders to strengthen their response to the dementia challenge.

Full document: Risk reduction of cognitive decline and dementia

See also: WHO press release

Goal-setting can help people with early-stage dementia improve function

Large trial shows that cognitive rehabilitation helped people mildly affected by dementia to improve their goal setting and attainment. Disappointingly, this wasn’t accompanied by improvements in self-efficacy, depression and anxiety, cognitive functioning, quality of life or carer stress | Health Technology Assessment | via NIHR


Goal-setting as part of cognitive rehabilitation delivered by occupational therapists helped people with early dementia progress towards independence in daily tasks, with benefits lasting for nine months. This approach focuses on the everyday tasks needing concentration and memory and prioritising those that matter most to individuals, from using the cooker or answering the phone. The intervention was well-received, but the cost-effectiveness is not clear, because quality of life continued to deteriorate.

Therapists delivered ten sessions of cognitive rehabilitation over three months, with another four sessions over the next six months. Rehabilitation was intended to identify goals important to the person with dementia and their carer (including basic self-care and participation in events). The therapist identified barriers to achievement and worked on helping people to overcome them.

Compared to people with early dementia treated with usual care, those given cognitive rehabilitation were more likely to show progress towards their goals after three months. However, secondary outcomes such as quality of life did not show improvement for patients or carers, meaning that the intervention was not cost-effective by usual measures.

Full details at National Institute for Health Research

Clare L, Kudlicka A, Oyebode J R et al.| Goal-oriented cognitive rehabilitation for early-stage Alzheimer’s and related dementias: the GREAT RCT | Health Technol Assess. 2019;23(10).

Depression in type 1 diabetes and risk of dementia

Paola Gilsanz et al. | Depression in type 1 diabetes and risk of dementia | Aging & Mental Health | Volume 23:7, p880-886

Objective: Depression afflicts 14% of individuals with type 1 diabetes (T1D). Depression is a robust risk factor for dementia but it is unknown if this holds true for individuals with T1D, who recently started living to an age conferring dementia risk. We examined if depression is a dementia risk factor among elderly individuals with T1D.

Methods: 3,742 individuals with T1D aged over 50 were followed for dementia from 1/1/96-9/30/2015. Depression, dementia, and comorbidities were abstracted from electronic medical records. Cox proportional hazard models estimated the association between depression and dementia adjusting for demographics, glycosylated hemoglobin, severe dysglycemic epidsodes, stroke, heart disease, nephropathy, and end stage renal disease. The cumulative incidence of dementia by depression was estimated conditional on survival dementia-free to age 55.

Results: Five percent (N = 182) were diagnosed with dementia and 20% had baseline depression. Depression was associated with a 72% increase in dementia (fully adjusted HR = 1.72; 95% CI:1.12-2.65). The 25-year cumulative incidence of dementia was more than double for those with versus without depression (27% vs. 12%).

Conclusions: For people with T1D, depression significantly increases dementia risk. Given the pervasiveness of depression in T1D, this has major implications for successful aging in this population recently living to old age.

Virtual reality can improve quality of life for people with dementia

Virtual reality (VR) technology could vastly improve the quality of life for people with dementia by helping to recall past memories, reduce aggression and improve interactions with caregivers, new research has discovered | University of Kent | via ScienceDaily


Many people with dementia (PWD) residing in long-term care may face barriers in accessing experiences beyond their physical premises; this may be due to location, mobility constraints, legal mental health act restrictions, or offence-related restrictions.

In recent years, there have been research interests towards designing non-pharmacological interventions aiming to improve the Quality of Life (QoL) for PWD within long-term care.

The authors of this study explored the use of Virtual Reality (VR) as a tool to provide 360°-video based experiences for individuals with moderate to severe dementia residing in a locked psychiatric hospital.

The paper discusses the appeal of using VR for PWD, and the observed impact of such interaction. It also presents the design opportunities, pitfalls, and recommendations for future deployment in healthcare services. This paper demonstrates the potential of VR as a virtual alternative to experiences that may be difficult to reach for PWD residing within locked setting.

Full article: Tabbaa, L. et al. |  Bring the Outside In: Providing Accessible Experiences Through VR for People with Dementia in Locked Psychiatric Hospitals | Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 2019 | DOI: 10.1145/3290605.3300466

See also: VR can improve quality of life for people with dementia | ScienceDaily

Managing behaviours that challenge in dementia

Charlotte Mallon, Janet Krska & Shivaun GammieViews and experiences of care home staff on managing behaviours that challenge in dementia: a national survey in England, Aging & Mental Health | 2019 Vol 23: no.6  p698-705

Aim: To determine the views of care home (CH) staff in relation to experiencing and managing behaviour that challenges (BtC) in dementia and their experiences of training.

Method: Cross-sectional survey using a self-report questionnaire, distributed to staff employed in a 20% sample of all registered dementia-specialist CHs in England, either by postal or direct distribution.

Results: Questionnaires were returned from 352 care staff (25%), representing 5% of all dementia-specialist CHs, half were CH without nursing. Respondents estimated caring for 14,585 residents, 9,361 with dementia and 5,258 with BtC. 30.2% of residents with dementia were estimated as being prescribed a medicine to control BtC. BtC reported as experienced by most respondents were: shouting (96.6%), verbal aggression (96.3%) and physical aggression (95.7%), with physical aggression viewed as most difficult to manage. Top behaviours experienced every shift were: wandering (77.8%), perseveration (68.2%) and restlessness (68.2%).

Approaches such as assessing residents, knowing them and treating them as individuals, identifying triggers, having time for them and using an appropriate style of communication, were viewed as key to managing BtC, rather than guideline-specific interventions such as massage, aromatherapy and animal-assisted therapy.

Only 38% agreed/strongly agreed medicines were useful to control BtC, which was related to the extent to which they were prescribed. Training was available, but variable in quality with on-line training being least useful and on-the job training most desirable.

Conclusion: BtC are commonly and frequently experienced by care staff, who consider individual approaches, having time and good communication are key to successful management.

Full detail at Aging & Mental Health

Teaching happiness to dementia caregivers reduces their depression, anxiety

Moskowitz, J. T  et al. | Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers | Health Psychology, 2019 | Vol. 38 (5): p391 – 402

Caring for family members with dementia causes significant emotional and physical stress that increases caregivers’ risk of depression, anxiety and death. A new method of coping with that stress by teaching people how to focus on positive emotions reduced their anxiety and depression after six weeks. It also resulted in better self-reported physical health and positive attitudes toward caregiving.

The intervention included teaching participants eight skills that increase positive emotions. The skills taught were:

1. Recognizing a positive event each day

2. Savoring that positive event and logging it in a journal or telling someone about it

3. Starting a daily gratitude journal

4. Listing a personal strength each day and noting how you used this strength recently

5. Setting an attainable goal each day and noting your progress

6. Reporting a relatively minor stressor each day, then listing ways in which the event can be positively reappraised or reframed

7. Understanding small acts of kindness can have a big impact on positive emotion and practicing a small act of kindness each day

8. Practicing mindfulness through paying attention to daily experiences and with a daily 10-minute breathing exercise, concentrating on the breath

Full story at ScienceDaily 

Full abstract at Health Psychology

Living with a partner with dementia

Barbara Egilstrod et al | Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives |Aging & Mental Health | 2019 Vol.23:5, p541-550

Objectives: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses’ needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses’ lived experiences of living with a partner with dementia.

Methods: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken.



Findings: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future.

Conclusion: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses’ experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.

Full document available here