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The project to develop Personalised Dementia Information Prescriptions builds upon an Oxfordshire based initiative called Dementia Web.
Dementia Web is a national website supported by a well-established charity, Guideposts Trust, which provides care, support, activity and information for vulnerable children and adults.
In May 2012 Dementia Web launched a national 24 hour 7 day per week telephone helpline, recognising that many people could not access the internet or that complex or emotional need could not be met on-line. Call handlers found there were gaps in the information that callers had available to them and a number of common issues that were emerging, which was making it difficult for them to deal with calls effectively. The most significant was that people had either never been given or had forgotten important information that may have related to the person’s care or condition, which raised the need for timely information and support to be provided.
The people calling needed:
- Personally and locally relevant information
- Written information for the caller to support information given during the call
- Signposting to appropriate services
- Additional factsheets and information about other health issues due to the impact of co-morbidities.
Opportunities and actions
Through research and consultation with people who have dementia, carers and professionals, a template was created to cover ten key pertinent information areas. These provided a concise, impartial overview of all relevant local services and organisations across health care, social care and the voluntary sector. It includes a list of key services, organisations and contact telephone numbers. Dementia-specific support is highlighted. The 24 hour dementia helpline number is also included in order to access a more bespoke service as required.
Information was provided about local dementia-specific support, but facts about provision for difficulties being experienced in other areas of life was also needed. By taking a holistic overview of an individual’s health and social care needs, the potential strain on the carer or person with dementia could be reduced. Therefore the Information Prescription covers things such as domiciliary health support, financial benefits and advocacy services.
Once the template was developed, consultation with carer groups and professionals received positive feedback and commitment to use the template.
The new service
The Personalised Dementia Information Prescription leaflets were developed using a nationally standardised format, where the information included is checked and updated every three months to ensure it is correct. The information relating to locally available services requires a local author, for example who to contact for advocacy services.
The leaflet is currently available to approximately 50,000 people with dementia across the country. This represents 30 local information prescriptions which are available to download at www.dementiaweb.org.uk.
The system is mainly accessed at the point of diagnosis through general practice, but is also appropriate for use in other parts of the care system, for example, discharge planning (Royal United Hospital Bath), secondary care and community pharmacies.
When the Dementia Information Prescription is prescribed, the person with dementia or their carer will be given a generalised local Personalised Dementia Information Prescription leaflet.
The Information Prescription linked to a helpline and on- going clinical support has the potential to reduce avoidable admissions to hospital and unnecessary care home placement. Recent research suggested that in one London borough this could save £240,000 (2013, BUPA). Further detailed evidence is expected from a planned evaluation.
The impact of information, education and support on the quality of life for the person with dementia and the family carers is immeasurable, but universally acknowledged as an essential detail of the post diagnosis process. (2013, Carers Trust, A Road Less Rocky – Supporting Carers of People with Dementia)
Some of the qualitative benefits may be less easy to quantify, but for a worried carer it would be difficult to put a price on the peace of mind they may have from talking through worrying experiences on a 24/7 basis with someone who understands dementia.
“It is a really useful ‘all in one piece leaflet’ which contains all the useful contact info that otherwise isn’t readily available.”
“This looks pretty comprehensive and should help to fill the void people experience after diagnosis when no further services are set up for them.”
“The prescription is going down well with our patients.”
“If only this was available for every long term condition.”
“I think it is great that you are pulling together such a breadth of contacts into one easy access leaflet.”
“Localised information in one place is original and helpful.”
“I’m giving it to all the patients who come through the memory clinic.”