Karen Dodd

Transition to old age — what can we do to aid the process?

This article looks at how people with learning disabilities, including people with learning disabilities who develop dementia, make the transition to old age. It identifies key issues in understanding the transition to old age for people with learning disabilities, including how the ageing process may be different for this group, lack of agreement as to what constitutes old age for people with learning disabilities, the heterogeneity of this population and the inadequacy of service responses to their changing needs. It advocates a number of clinical and service responses that might help make the transition easier for people.

Predictors of Age of Diagnosis and Survival of Alzheimer’s Disease in Down Syndrome

Background: People with Down syndrome (DS) are an ultra-high risk population for Alzheimer’s disease (AD). Understanding the factors associated with age of onset and survival in this population could highlight factors associated with modulation of the amyloid cascade. Objective: This study aimed to establish the typical age at diagnosis and survival associated with AD in DS and the risk factors associated with these. Methods: Data was obtained from the Aging with Down Syndrome and Intellectual Disabilities (ADSID) research database, consisting of data extracted from clinical records of patients seen by Community Intellectual Disability Services (CIDS) in England. Survival times when considering different risk factors were calculated. Results: The mean age of diagnosis was 55.80 years, SD 6.29. Median survival time after diagnosis was 3.78 years, and median age at death was approximately 60 years. Survival time was associated with age of diagnosis, severity of intellectual disability, living status, anti-dementia medication status, and history of epilepsy. Age at diagnosis and treatment status remained predictive of survival time following adjustment. Conclusion: This study provides the best estimate of survival in dementia within the DS population to date, and is in keeping with previous estimates from smaller studies in the DS population. This study provides important estimates and insights into possible predictors of survival and age of diagnosis of AD in adults with DS, which will inform selection of participants for treatment trials in the future.

Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study

BACKGROUND There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimers disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimers disease. METHOD This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimers disease collected from specialist community services in England. RESULTS Median survival time (5.59 years, 95% CI 4.67-6.67) for those on medication (n = 145, mainly cholinesterase inhibitors) was significantly greater than for those not prescribed medication (n = 165) (3.45 years, 95% CI 2.91-4.13, log-rank test P<0.001). Sequential assessments demonstrated an early effect in maintaining cognitive function. CONCLUSIONS Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimers disease that is comparable with sporadic Alzheimers disease; a trial to test the effect of earlier treatment (prodromal Alzheimers disease) in Down syndrome may be indicated. Declaration of interest A.S. has undertaken consulting for Ono Pharmaceuticals, outside the submitted work. Z.W. has received a consultancy fee and grant from GE Healthcare, outside the submitted work.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support

ABSTRACT Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the persons needs as dementia progresses. Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Developing and piloting the QOMID – quality outcome measure for individuals with intellectual disabilities and dementia

Purpose – Outcome measurement is a key priority for services. There are no papers on specific overall quality outcome measures for people with intellectual disabilities who have dementia. The purpose of this paper is to describe the development and piloting of a new measure. Design/methodology/approach – A process was developed to measure quality outcomes across all stages of dementia. The reliability of the tool was measured using Cronbach’s α coefficients, along with data about its clinical utility. Findings – The QOMID has good reliability, face validity and internal reliability suggesting that all domains contribute equally towards the construct of quality outcome. An exploratory factor analysis revealed that there may be four or five sub-factors within the QOMID, The clinical utility of the assessment tool was explored and it can be concluded that the QOMID is simple, fairly quick and effective. Research limitations/implications – The scale has good psychometric properties and the initial parameters ...

Effectiveness of brief training in cognitive-behaviour therapy techniques for staff working with people with intellectual disabilities

Purpose – There is little research addressing the delivery of training for health professionals who are interested in using cognitive-behaviour therapy (CBT) techniques as an adjunct to their current role. This paper describes the establishment and evaluation of a CBT training course to develop CBT skills in staff working with people with intellectual disabilities in Trust healthcare settings. The course would enable staff to learn how they could incorporate these skills into their daily practice to help them understand and work more effectively with people with intellectual disabilities. Design/methodology/approach – A CBT training course was designed to teach staff the use of a number of basic and specific CBT techniques and principles that staff could use within their current roles. Specific issues in relation to people with intellectual disabilities were included, e.g. understanding cognitive deficits as well as cognitive distortions. The course ran for six sessions on a fortnightly basis, followed by...

Improving Access to Psychological Therapies for people with intellectual disabilities – role of a reference group in achieving change

Purpose The purpose of this paper is to explore the importance of equal access to Improving Access to Psychological Therapies (IAPT) for people with intellectual disabilities. Design/methodology/approach The paper identifies barriers to access and shows how a reference group can work to solve the barriers and increase access. Findings The paper evaluates the authors’ progress to date and how the authors plan to continue to take the work forward. Practical implications The paper highlights some of the factors responsible for the authors’ success and gives information that will be helpful to other areas who are interested in facilitating equal access. Originality/value The paper demonstrates how the focus of a reference group can drive improvements across services to improve access for people with intellectual disabilities to IAPT services.