Research has shown that between 75% and 89% of care home residents have dementia, and that many of these residents are undiagnosed (Lithgow, Jackson, & Browne, 2012; Stewart et al, 2014). In 2015, the Health Innovation Network (HIN) worked with three care homes to co-design the Dementia Assessment Referral to GP (DeAR-GP).
DeAR-GP is a case finding tool which supports care workers in care home settings to identify people who are showing signs of dementia or confusion and refer them to their GP or healthcare professional for review. Once completed, DeAR-GP acts as a communication aide between care workers and GPs and supports NICE ‘Dementia: support in health and social care’ (QS1) quality statement 2: ‘People with suspected dementia are referred to a memory assessment service’.
The DeAR-GP user guide provides a step-by-step process of how to implement DeAR-GP in care homes drawing on experience gained in the small scale pilot. DeAR-GP is supported by the Alzheimer’s Society.
The DeAR-GP user guide to accompany our submission is available to download here.
Aims & Objectives
The aim of this project was to increase identification of possible dementia and subsequent diagnosis rates in residential and nursing homes in South London by co-designing a dementia case-finding tool with, and for care workers. The objectives of the project were:
1) To co-design a dementia case-finding tool by holding focus groups to ascertain care workers':
- knowledge and understanding of dementia
- experience of providing dementia care
- preferences of a selection of brief cognitive test
2) Test the resulting case-finding tool to establish whether care workers have the skills, knowledge and understanding to use it appropriately and autonomously
3) To determine what proportion of those residents identified were subsequently diagnosed with dementia by a clinician.
The Alzheimer’s Society estimates that up to 80% of residents in care homes have dementia or severe memory problems (Alzheimer’s Society, 2013). A 2016 study published on NCBI website estimates savings in medical care costs of 442 Euros per person with a diagnosis of dementia compared directly to a person with dementia who is not yet diagnosed http://www.ncbi.nlm.nih.gov/pubmed/26446797.
Within South London there are currently 363 older adult care and nursing homes. Expressions of interest were invited from care homes in South London for their care workers to attend a focus group, led by a facilitator from the HIN. Five South London care homes and four GPs were involved in the feasibility study. The purpose of the focus groups was to gather care workers’ views on these themes.
- Feelings, knowledge, understanding and experience of dementia. This included:
- the challenges and rewards of caring for people with dementia
- understanding of the signs and symptoms of dementia
- Thoughts and preferences of presented case-finding tools
- Care workers were presented with a selection of existing cognitive tests and were asked questions about their preferences for each test.
- Thoughts on case-finding in the care home sector and perceived roles including
- if care workers have a role in detecting dementia
- confidence to use a dementia case finding tool. One-to-one interviews were also conducted with GPs to obtain feedback from clinicians.
The design of the case finding tool included a capacity and consent question for residents and the advice to include family carers as appropriate. The feasibility study was informed by the NICE Quality Standard [QS1] Quality statement 2: Memory assessment services; Quality statement: People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
It is well recognised that timely diagnosis can have a positive impact on the quality of life of people with dementia (Prince, Bryce, & Ferri, 2011). A diagnosis will aid the understanding of care workers, family members and friends, leading to better support of the person with dementia. It can lead to more appropriate care and support, it may give the person with dementia the opportunity to plan for the future and depending on the type and stage of dementia specific treatments or interventions may be available (Burns, 2014; Prince et al, 2011).
Focus groups were formed using three care homes. Participants included care workers and senior care workers. Registered nurses and care home managers were excluded, to enable the study to explore how to empower care workers in identifying residents who they thought might have dementia. Each focus group had between three and six participants, all of whom gave consent to the discussions being recorded and transcribed. One-to-one interviews were also conducted with GPs to obtain feedback from clinicians.
The methodology used to put the NICE guidance into practice included using the focus groups;
- To gather care workers’ views on these themes:
- feelings, knowledge, understanding and experience of dementia
- thoughts and preferences of presented case-finding tools
- thoughts on case-finding in the care home sector and perceived roles.
2. The thoughts and preferences on existing cognitive tests listed below
- AMT-10 (Abbreviated Mental Test – 10)
- AMT-4 (Abbreviated Mental Test – 4)
- “Test Your Memory” (TYM) test • GP-COG. C)
3. Thoughts around case-finding in the care home and perceived roles including;
- whether dementia case-finding should fall within their remit as care workers
- the role of the GP in the diagnosis of dementia in care home residents
- the confidence to complete a case-finding tool Informal interviews were conducted with four local GPs in South London.
They were shown a draft of the case-finding tool and were asked to provide general feedback on the concept, the design of the tool and implementation. The HIN was able to build on our existing relationships with south London care homes and offered the opportunity to participate in the feasibility study through our data base of 363 care homes.
The care home managers who volunteered were briefed on the concept that the HIN wanted to use the knowledge of the care staff that spent the most time with residents on the premise they were most likely to spot changes in behaviour and memory.
The HIN needed to ensure that the case finding tool was not used for indiscriminate screening of residents, this was overcome by including an initial case-finding question ‘Does the resident show signs of memory loss/confusion’ which required a negative answer ‘No’ obliging the care worker to stop the assessment. No services were discontinued as a result of the project. The £3300 costs incurred included the payment of staff to attend the focus groups and the design of the DeAR-GP Guide.
Results and evaluation
The following set of design principles were formed as an outcome of the focus groups. The tool needed to be:
- uncomplicated and easy to follow
- accessible to people with English as a second language or those who may not have much knowledge of British history and culture, to cater for care workers and residents from minority ethnic backgrounds
- aesthetically pleasing and easy to use
- Paper-based, as most care homes use paper notes. It was important to include
- an initial case-finding question to prevent indiscriminate screening of residents
- an observation chart as part of the case-finding tool, to provide clinicians with a more complete picture • the AMT-4 cognitive test*
- A referral letter in the same document so that clinicians would understand why it has been given to them and what it is
- an instruction sheet and a ‘Frequently Asked Questions’ document for care workers.
The AMT-4 cognitive test was chosen by the care workers as they stated that this would be the most easily completed in the time-constrained care home environment. The care workers also believed that the AMT-4 would be sensitive and specific enough to identify many residents in care homes with undiagnosed dementia.
Care workers completed 23 case-finding tools during the feasibility study. On review, clinicians diagnosed 12 (52%) with unspecified dementia and referred three (13%) to memory services. Five (22%) were found by the clinicians already to have a diagnosis which was unknown to the care homes. No further action was taken with one (4%) resident who had a normal cognitive score when assessed by a clinician and two (8%) were not reviewed by the clinicians because they were physically unwell at the time.
A follow-up focus group and evaluations completed by care workers suggested that the case-finding tool was easy to use. A specialist memory nurse said that the tool was “most helpful” and saved time as care workers had identified residents showing signs of dementia prior to their assessment.
The feasibility study showed that after a short training session, care workers in three care homes in south London were able to use the dementia case-finding tool appropriately with residents who they believed to show signs of dementia but did not have a diagnosis of dementia. Feedback was positive and showed that care workers felt empowered by DeAR-Gp. It helped their communication with clinicians and made it more robust. The project met the expectation set by the aim and objectives.
Key learning points
Points to consider when working with care homes to co –design and test projects include:
- use existing relationships to recruit care homes.
- always start with that premise that the care / nursing homes are the person’s own home.
- establish strong links with care home managers and their staff before commencing a project with a care home.
- design a simple leaflet /information sheet that can be left at the care home that will answer questions when you are not there.
- write and speak in plain English as many care workers may speak English as their second language.
- clearly state the benefits for the individual, care home, family, health and social care economy.
- Find out what time of the day is best for the care home be flexible in your approach If directly involving people with dementia please consider the following HIN engagement with care home resident’s guidance
- People with dementia remain able to express feelings into the late stages of the disease, think about the use of pictures/graphics that may help residents express these feelings
- Tailor the questions; are you asking just their own personal view /experience or observations of the home and other residents
- Before and after project intervention sampling may prove difficult as residents health is likely to deteriorate over time, consider how this will impact on the project.
- How are people ‘selected’ to take part in any engagement activity? Can people self-select?
- How we communicate with care home residents is crucial; see the dementia UK publication ‘tips for better communication with a person living with dementia’.