Learn about best practice
The first task for the Joint Action was to carry out a series of evidence reviews looking at best practice in the areas of diagnosis and post-diagnostic support, crisis and care coordination, residential care and dementia friendly communities. The detailed reports from each work package are available under the ‘resources’ section with a brief summary of findings below.
Diagnosis and post-diagnostic support
Diagnosis and post diagnostic support services can improve quality of life, while better care planning facilitated by high quality post-diagnostic support can also reduce preventable hospital and residential care admissions. This work has focussed on how to effect change and improvement in dementia diagnosis rates and post diagnostic supports, including the testing of different tools and approaches for diagnosis for people with dementia.
One of the main tasks has been to provide an overview of the main benefits and risks related to the diagnosis of dementia/neuro Cognitive Disorders (NCD) from the perspective of patients, caregivers, healthcare providers and society, and depending on the level/severity of the disease of the concerned patients. This has involved a literature review and suggestions for improvements, and on-line surveys of Governments, Health Professionals and Patient/Family Associations to help understand current practices in detection, diagnosis and post-diagnosis supports through Europe.
This literature review indicates that the pros and the cons of dementia diagnosis must be assessed at an individual level, and tailored to the needs and wishes of patients and carers, taking a number of things into account, including the patient’s personality and mood/state of mind at the time of diagnosis disclosure. These are considered in combination with the family/patient’s living environment, and social and financial resources, and the available healthcare and social care systems, and post-diagnostic supports which can vary significantly from one country to another. The manner of communication and the choice of the words used for the diagnostic disclosure seem to be crucial for the patient, affecting his/her own reaction and those of his/her relatives, facing the disease.
Crisis and Care Coordination
A crisis where the person with dementia, or their primary carer has an acute episode of illness or trauma, can lead to the person with dementia being admitted to hospital or a residential care institution. Such admissions are often unnecessary and the result of limited access to alternative and more appropriate care, or lack of care coordination between health and care providers. This in turn can lead to changes in patients’ behaviour as a result of their changed circumstances. Crisis support and good practice can significantly reduce strain on care-delivery systems and reduce family distress during such crises.
This work has focused on how to effect change and improvement in care co-ordination and crisis response services for people with dementia.
To do this, a mapping exercise was carried out and recommendations made, based on a review of relevant research and practices in dementia care coordination and crisis response services for people with dementia. The work has set about identifying models and good/best practice experience of structure and care organisation in Europe with a focus on the management of BPSD and other specific types of crisis; and it has looked at the adoption of a case management model of care organisation which:
- Reduces nursing home admission or hospitalisation of patients with dementia;
- Improves function and appropriate use of medications
- Increases use of community services and information and support services
- Improves the wellbeing of care givers (reducing depression, stress, etc.)
- The extent to which health and social care providers integrate their services, along with the intensity of case management are the key factors that appear to be related to the most effective case management.
At the last stages of dementia, many people will require 24 hour care and many may have to move to a nursing home or into residential care. This work has focused on the quality of residential care for people with dementia, describing:
- the importance of person-centred care as a fundamental of good quality care and to prevent Behavioural and Psychological Symptoms of Dementia (BPSD);
- the evidence for non-pharmacological approaches to BPSD and give recommendations for best practice in residential care;
- the evidence for proper use of antipsychotics in the treatment of BPSD and to give recommendations for best practice in the prescription of antipsychotics in residential care for people with dementia;
- the evidence for best practice in end of life care for people with dementia and give recommendations for how to provide end of life care in residential care settings
The review report set out a number of recommendations for ensuring person centred care for people with dementia in residential care, including helping staff to understand what it means in practice and making an effort to create an atmosphere of inclusion, respect and validation throughout all levels of the service.
Dementia Friendly Communities
This work has focused on how to effect change and improvement, to support people with dementia to live at home through the development of Dementia Friendly Communities (DFCs). The following definition was developed by the research team: In a ‘Dementia Friendly Community’, people with dementia are included and respected. Citizens, organisations and businesses work together to remove the barriers which stop people with dementia and their supporters from participating in community life.
The core of this work is structured around a model which identifies four different aspects of DFCs: ‘People’, ‘Place’, ‘Networks’ and ‘Resources’, with the voices and experiences of people living with dementia running though the centre of each.
- People - A clear message emerged from the research: the attitudes and behaviour of people are more critical to the creation of a DFC than the physical environment. Awareness and acceptance of other people is a key enabler of a DFC.
- Places - There is an emerging evidence base which demonstrates the importance of place in enabling the resilience and citizenship of people with dementia.
- Networks - Evidence suggests it is necessary to link up different activities by sharing information and developing a strategic approach. If coordinated action is to be taken over a geographical area, it is essential to engage a broad network of organisations, businesses, groups and individuals, including those with lived experience of dementia
- Resources - Some people believe much can be done locally with little money if there are strong networks and volunteers, while others feel that funding is essential if DFC initiatives and to be established widely and suitably. DFCs receive a huge range of financial resources, but time, energy and leadership are the key resources, though the input of people with dementia requires some funding if it is to be effective and sustainable.