Dementia Rarely Travels Alone: living with dementia and other conditions | Alzheimers Society
A report on the All Party Parliamentary Group on Dementia’s inquiry that was held last year in to dementia and comorbidities. The inquiry has brought to light the scale of difficulty faced by people living with dementia and other health conditions.
Despite significant progress to deliver integrated care services and support, the health and social system frequently treats conditions in isolation so that people with dementia and other health conditions receive disjointed, substandard care and treatment.
The report identifies the changes needed across the healthcare system so that the NHS can meet the challenge of caring for people living with dementia and other conditions, supporting them to live fulfilled lives and makes recommendations as to how this can be achieved.
This review was carried out to explore the extent that people living with dementia have co-existing mental health problems. The main finding of this review is that comorbidities are underdiagnosed in people living with dementia, not extensively researched and therefore not understood fully. The review makes a number of recommendations at policy, organisation and programme level.
Gilhooly, K.J. et. al. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatrics. Published: 18 May 2016
There has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014.
A meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches.
The meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of “Psychological Well-Being v. Psychological Morbidity” and two narrower dimensions of “Knowledge and Coping” and of “Institutionalisation Delay”.
This meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for caregivers were associated with wishful thinking, denial and avoidance coping strategies. Psychosocial and Psychoeducational interventions were beneficial for caregivers and for people with dementia. Support groups, Multicomponent interventions and Joint Engagements by both caregivers and people with dementia were generally found to be beneficial. It was notable that virtually all reviews addressed very general coping strategies for stress broadly considered, rather than in terms of specific remedies for specific sources of stress. Investigation of specific stressors and remedies would seem to be a useful area for future research.
London Clinical Networks. Published online: 10 May 2106
Guidance for commissioners and providers to meet the NICE Quality Standard on Dementia (QS1), which states that people with dementia should have an assessment and an ongoing personalised care plan, agreed across health and social care.
This is a guide for »
Service providers, including health, social care, voluntary and charitable organisations
This guide will be of interest to »
People living with dementia
Their families and friends
Practitioners in dementia care
The purpose of this guidance is to »
Describe the key elements of person-centred support planning
Describe how to write a new support plan
A support plan should capture what is important to the person living with dementia.
Once a support plan is put in place it needs to be reviewed regularly, to reflect changes in needs, wishes and circumstances.
The professional who helps putting the support plan together should assume the person with dementia has capacity and use clinical judgement, using the Mental Capacity Act when needed.
CEO and Co-Founder of DAI, Kate Swaffer said the booklet would provide an important source of information for people with dementia and a crucial tool for addressing national and global policy that affects people with dementia.
You can view a video of Kate Swaffer and Peter Mittler introducing the need for a human rights based approach to dementia at the recent DAI Conference here:
To help commemorate these two occasions, the World Health Organisation (WHO) has circulated a recently developed compendium of good practice in nursing and midwifery. This compendium presents 55 case studies from 18 countries, and illustrates the fundamental importance nurses and midwives, across the European region, in enhancing public health and well-being in different care settings.
One of the contributions selected from the UK for this international compendium summarises work at the Royal Wolverhampton NHS Trust in improving the care of people with dementia receiving acute hospital in-patient treatment.
Alzheimer’s Society. Published online 13 May 2016.
Over half (56%) of people are putting off seeking a dementia diagnosis for up to a year or more, a study carried out by Alzheimer’s Society has found. Dementia is the most feared health condition in the UK, perhaps explaining also why almost two-thirds of people surveyed (62%) felt a diagnosis would mean their life was over.
The study launches Dementia Awareness Week 2016, 15-21 May, as Alzheimer’s Society calls on people to confront dementia head on, be aware that they can do something about it and come to the charity for help and support.
225,000 people will develop dementia this year – that’s one person every three minutes. The leading dementia charity is warning that a lack of diagnosis is denying many of these people the chance of getting the best possible treatment, information and/or support – evidence shows the earlier on you receive these, the better your chance of living well for longer. It also means that thousands of people are not being enabled toplan for the future while they still have capacity to make important decisions.
Help raise awareness of the Week by sharing the film of Rhod Gilbert confronting dementia.
University of Adelaide researchers have developed a new theory for the causes of dementia and other neurodegenerative diseases, involving an out-of-control immune system.
Published in the journal Frontiers in Neuroscience, the researchers have assembled strong evidence that the neurological decline common to these diseases is caused by ‘auto-inflammation’, where the body’s own immune system develops a persistent inflammatory response and causes brain cells to die.
Previously, researchers have focused on the role of protein deposits called amyloid plaques that lodge in the brain of Alzheimer’s affected people. But it is now clear that this is an inadequate explanation for Alzheimer’s Disease.
There are many distinct forms of neurodegeneration including Alzheimer’s, Parkinson’s and Huntington’s Diseases. These conditions are distinguished by the different types of brain nerve cells that are first affected and by the symptoms that first appear. However, as all of these diseases progress, they become more similar.
Goodman, R.A. et al.Alzheimer’s & Dementia. Published online: 10 May 2016
Rapid growth of the older adult population requires greater epidemiologic characterization of dementia.
We developed national prevalence estimates of diagnosed dementia and subtypes in the highest risk U.S. population by analyzing Centers for Medicare & Medicaid administrative enrollment and claims data for 100% of Medicare fee-for-service beneficiaries enrolled during 2011–2013 and age ≥68 years as of December 31, 2013 (n = 21.6 million).
Over 3.1 million (14.4%) beneficiaries had a claim for a service and/or treatment for any dementia subtype.
Dementia not otherwise specified was the most common diagnosis (present in 92.9%); the most common subtype was Alzheimer’s (43.5%), followed by vascular (14.5%), Lewy body (5.4%), frontotemporal (1.0%), and alcohol induced (0.7%).
This study, the first to document concurrent prevalence of primary dementia subtypes among this U.S. population, provides findings that can assist in prioritizing dementia research, clinical services, and caregiving resources.
Turner, A. et al. Aging & Mental Health. Published online: 4 May 2016
Objectives: Deceptive practice has been shown to be endemic in long-term care settings. However, little is known about the use of deception in dementia care within general hospitals and staff attitudes towards this practice. This study aimed to develop understanding of the experiences of general hospital staff and explore their decision-making processes when choosing whether to tell the truth or deceive a patient with dementia.
Method: This qualitative study drew upon a constructivist grounded theory approach to analyse data gathered from semi-structured interviews with a range of hospital staff. A model, grounded in participant experiences, was developed to describe their decision-making processes.
Findings: Participants identified particular triggers that set in motion the need for a response. Various mediating factors influenced how staff chose to respond to these triggers. Overall, hospital staff were reluctant to either tell the truth or to lie to patients. Instead, ‘distracting’ or ‘passing the buck’ to another member of staff were preferred strategies. The issue of how truth and deception are defined was identified.
Conclusion: The study adds to the growing research regarding the use of lies in dementia care by considering the decision-making processes for staff in general hospitals. Various factors influence how staff choose to respond to patients with dementia and whether deception is used. Similarities and differences with long-term dementia care settings are discussed. Clinical and research implications include: opening up the topic for further debate, implementing staff training about communication and evaluating the impact of these processes.