Dementia: recognition and cognitive testing in community and primary care settings

Dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes, as well as loss of cognitive and social functioning brought about by progressive neurological disorders (Barber, 2020). There are over 200 subtypes of dementia, but the most common are Alzheimer's, vascular, Lewy Body, mixed dementia (often a combination of Alzheimer's and vascular) and frontotemporal dementias (Sandilyan and Dening, 2019) (Table 1). Based on prevalence modelling, there are estimated to be 944 000 people cur rently living with dementia in the UK and estimates indicate this will increase to over 2 million by 2051 (Wittenberg et al, 2019). Dementia is associated with old age; however, of the 944 000 people living with dementia, approximately 70 800 will be under 65 years old when diagnosed with (young onset) dementia (Carter et al, 2022). In England, due to their progressive nature, dementia and Alzheimer's disease remained the leading cause of death in February 2023 (for the 20th consecutive month), with 122.1 deaths per 100 000 people (5466 deaths) (Office for National Statistics (ONS), 2023). In March 2012, the Prime Minister set a challenge to deliver major improvements in dementia care (Department of Health (DH), 2012) that proposed three main goals for action:

• Driving improvements in health and care
• Creating dementia-friendly communities and
• Improving dementia research.

One of the main concerns at this time was that only 42% of people with dementia in England had a formal diagnosis with diagnostics rates varying in regions from 27% in the worst-performing areas to 59% in the best. Early detection of dementia is consistent with the first goal—improvements in high-quality healthcare. However, while the government's attention to dementia and its timely diagnosis was welcomed by clinicians, concern was expressed about the potential consequences of announcing a Dementia Case Finding Scheme, screening, to increase diagnosis rates (Kmietowicz, 2012). As a result of the challenges made by clinicians, the UK National Screening Committee (NSC) reviewed its previous decisions in 2009 and 2014 to not recommend screening and again, concluded that the evidence base remained limited and affirmed its recommendations (NSC, 2019):

• There are no screening tests, which could find people with dementia before they show symptoms
• There is no evidence that current treatments for dementia are effective
• There is concern about how people diagnosed by screening may be affected by dementia–related screening.

However, screening for dementia is not the same as recognising the possible signs and symptoms of early dementia and enabling a timely diagnosis.

Improving identification and diagnosis of dementia

The National Institute for Health and Care Excellence (NICE, 2018) guideline, amongst many other things, recommends people thought to have dementia receive timely access to an assessment with the Quality Standards, indicating specifically when it is appropriate to refer for a specialist diagnostic service (NICE, 2018). A timely diagnosis of dementia refers to a diagnosis at the stage when a person comes to the attention of clinicians because of concerns about changes in their cognition, behaviour, or functioning (Dubois et al, 2016). A timely diagnosis enables people with dementia and their families to access effective care management and post-diagnostic support as early as possible in the course of the disease.

Dementia is not a nor mal part of ageing (Alzheimer's Disease International, 2021); hence, getting a diagnosis of dementia will:

• Enable early access to post-diagnostic support, information and resources for the person with the diagnosis and their family
• Demystify and destigmatise the condition (Phillipson et al, 2019)
• Maximise quality of life for both the person with the diagnosis and their family (Mate et al, 2012)
• Early benefits from support and access to available drug (where indicated) and non-drug therapies
• Plan for the future whilst still having the mental capacity to do so.

Currently, the diagnosis of dementia is initiated mostly on a clinician's suspicion based on patient symptoms or caregivers’ concerns, and usually in a community or primary care setting. Missed and delayed dementia diagnosis leads to lost opportunities for treatment and increases patient and caregiver burden. Dementia, if left undiagnosed can have an insidious and devastating impact on the outcomes for people with dementia and their families. This article, using a fictional case study, will illustrate some of the issues that can present community nurses with the opportunity to both recognise the symptoms of a possible dementia and then actions to consider that may potentially lead to both an early and timely diagnosis.

Community nurses play a key role in monitoring long-term conditions, placing them in a unique position of not only being able to offer dementia risk reduction advice but also in observing changes in the cognition of their patients. Furthermore, they may be the first point of contact for those who are concerned that they, or a family member, may have dementia (Robinson et al, 2015) (Box 1).

Box 1.Case studyShirley is 79 years old and is a retired bookkeeper from the local car dealership. She was married to Edward who was the village post man up to his retirement at the age of 66 years. He died shortly after retirement due to prostate cancer. Shirley has lived alone for over 10 years now. Shirley has two sons, Jay and Rob, who remained living in London upon completion of their degrees. Her sons tend to visit on ‘high days and holidays’ so Jay and Rob have little understanding of their mother's health status. Furthermore, Shirley is very stoical and does not want to bother her sons with her health worries.You have known Shirley over many years as she has long standing circulatory problems in her lower limbs, which were exacerbated by poorly controlled diabetes. This causes her a lot of pain and mobility problems. Her shins are prone to ulcerate after minor traumas, which require dressings for long periods as they heal. She attends her routine health checks and GP appointments relating to her diabetes, COPD, and heart failure when she can arrange a friend or one of her sons to help her there. Shirley had missed her annual health review due last week, so the GP asks you to see how she is when you next visit to renew her dressings.As part of your visit you see to her wounds and ask her aspects of the information required in her health check, such as if she has any concerns about her memory, at which point she smiles and says no. You continue with the review and note that her blood sugar is slightly higher than normal. You discuss her raised blood sugar and offer some dietary advice. She admits she does not eat very healthily as she cannot get out to shop easily and cooking is a problem as it is painful to stand for long.

The conversations community nurses have with their older patients (and families) and their observations while undertaking routine interventions, such as renewing dressings, checking blood pressure, weight, glucose levels or lung function can contain clues about any worsening cognitive function (Iliffe, 2019). Therefore, community nurses may be the first to have concerns or observe symptoms, so an awareness of the varying symptoms and changes that might occur at the beginning of the dementia process is important. This will ensure that people living with dementia and their families are able to get the support they need and deserve (Aldridge and Dening, 2019). When a community nurse suspects a person of having a possible dementia it is important to both understand what can be attributed to normal ageing (Table 2) and also to identify and treat any reversible conditions that mimic dementia. Conditions such as depression, thyroid dysfunction, nutritional deficiency, infections and metabolic disorders, should be ruled out by relevant investigations before moving on to consider the cause of the problems being caused by dementia. In Shirley's case, she is now showing signs of forgetfulness; failing to attend to her diabetic care of which she has lived with for several decades and forgetting to attend health checks, which she has religiously stuck to over the many years the nurse has known her.

Opportunities to improve identification

As with Shirley, many people at higher risk of developing dementia are invited to annual health reviews for long-term conditions in primary care as part of the expectations laid out in the NHS England Quality Outcomes Framework (QOF). It is an incentive scheme that rewards GP practices in England and Wales to improve the quality of care provided to their patients and helps standardise improvements in the delivery of primary care (Barrett and Burns, 2014).

There may be situations when a community nurse might be alone in identifying changes. The person themselves may not recognise the extent of change in their cognition or they may even consider the changes as an inevitable part of the ageing process. Family members may live at a distance, as with Shirley's sons, and have no immediate appreciation of the changes that are occurring in their relative or they too might attribute them to ageing or other factors or life events. However, the nurse might feel that these factors do not fully explain these changes (Iliffe, 2019). Similarly, a community nurse may feel that there is a risk of harm or they may cause offense if they raise their concerns with the individual or with their family, but this is rarely the case (Iliffe, 2019). Indeed, as part of the annual health review process, Shirley is used to being asked the question: ‘Do you have any concerns about your memory?’, where the response is recorded as Yes or No (Box 2).

Box 2.Reflection pointsShirley has a high risk of developing dementia and has denied any concerns about her memory, despite failing to remember her appointments and is now failing to see the significance of not adhering to her diet. How might you tackle this situation and enable a test of her cognition?Thinking about your other older patients, have any of them showed recent changes in their memory, cognition or functioning, that might be indicative of a developing dementia?

A diagnosis of dementia should not be made due to concerns about memory alone; although memory loss is the most common symptom experienced by people in the early stages of dementia, it is also important to highlight that there are other cognitive deficits and functional impairments that can be experienced. For some forms of dementia, the person may not have any problems with their memory at all but experience changes in their personality, behaviour, mood, and social functioning (NICE, 2018).

However, maximising on the opportunities that your care interventions provide or during the health checks and reviews, can be vital in offering people with dementia and their families the opportunity to seek a timely diagnosis. As noted earlier, while general population screening is neither welcomed by clinicians nor validated by research, there is justification to consider vigilance in high risk populations (Barrett and Burns, 2014).

Cognitive assessment measures: which one to use?

When testing or measuring a person's cognition, you should use a validated, brief and structured cognitive instrument (NICE 2018). This may not be straight forward as there are many brief cognitive assessment tools available for use in community care. However, the benefits and pitfalls of various brief cognitive assessment tools has been a long-standing issue (Lorentz et al, 2002; Tuch et al, 2021). Tools that have enjoyed a common use in all care settings, such as the Mini-Mental State Examination, are no longer accessible for use due to licensing restrictions. Studies have contrasted and compared many brief cognitive measures and identified three, which showed the most promise for application in a community care setting (Lorentz et al, 2002; Tuch et al, 2021). These are:

• The Mini-Cog (Borson et al, 2003)
• The Memory Impairment Screen (Buschke et al, 1999)
• The General Practitioner Assessment of Cognition (GPCOG) (Brodaty et al, 2002).

Whichever brief cognitive assessment tool you use, it is essential that you first seek consent prior to its administration; patients do have the right to refuse. However, if you believe a patient lacks the capacity to consent and have assessed their capacity appropriately as outlined in the Mental Capacity Act (DH, 2005), you may consider administering it in their best interests. In Shirley's case, she may well agree to answer a few simple questions about her cognition as she has known you for some time and has previously been happy to answer such questions during her previous health checks. Brief cognitive screening tools should not be seen as a diagnostic tool but act as an indicator for further investigation. Similarly, a patient's result may not indicate a problem with cognition. However, if the patient or someone close to them offers information that would suggest they are having difficulty, this should not be ignored and referral for a fuller assessment is recommended (NICE, 2018).

What next?

Alongside the administration of a brief cognitive assessment, community nurses need to be aware of the further tests that need to be conducted before an onward referral to a memory assessment service is made. In discussion with the person, their family and the GP, a full dementia screen can be undertaken to include blood tests and urinalysis in the first instance to exclude other medical reversible causes of their symptoms. Where appropriate, this should include screening for depression and anxiety. Following exclusion of other reversible or treatable causative factors (Table 3) it may be necessary to refer the person to the local memory assessment service if further assessment is required (Ray and Dening, 2020).

Therefore, community nurses should be aware of local processes and pathways for further memory assessment, which will allow them to be responsive in offering advice and information on what to expect next within the diagnostic pathway but also in the requirement to develop a care plan, as indicated in the Dementia Quality standard, number 2 (NICE, 2018). Of equal importance is the ability to offer the patient and their family members information on where they can access specialist support and information relating to dementia (Box 3).

Box 3.Resources and further reading

• Admiral Nurse Dementia Helpline: 0800 888 6678 or email helpline@dementiauk.org
• Dening, KH. Evidence based practice in dementia for nurses and nursing students. London: Jessica Kingsley Publishers; 2019
• Dementia Assessment and Diagnosis: Pathway. https://pathways.nice.org.uk/pathways/dementia/dementia-assessment-and-diagnosis
• The Cognitive Assessment Toolkit: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/alzheimers_society_cognitive_assessment_toolkit.pdf

Conclusion

A greater awareness of the signs of a possible early dementia as well as the potential conditions that can mimic dementia is essential for all community nurses. However, when dementia is suspected, a timely diagnosis is important to ensure adequate support, interventions and where appropriate, treatment can be accessed by families affected by it. Community nurses may often be the first port of call for people worried about their cognition or where families are concerned about someone they care for. Detecting a possible dementia early requires increased vigilance in community nursing and there are many simple steps that can be taken to commence the diagnostic process of dementia, such as in the deployment of one of the brief cognitive assessment tools and referral for a more comprehensive cognitive assessment.

Key points

• Dementia is associated with old age, however, it is not inevitable as we age
• Community nurses are well placed to recognise some of the early signs and manifestations of early dementia in their patients
• There are several brief cognitive assessment tools that can be used in a community and primary care setting
• Community nurses, once they suspect dementia, need to be familiar with their local dementia diagnostic pathway to enable further assessment.

CPD reflective questions

• Are you aware of your local dementia diagnosis pathway, should you have concerns about one of your patients?
• Reflect on your caseload in the last month; how many people on your caseload have dementia and how many do you think may have dementia but are nor diagnosed?
• How many of these have been diagnosed with a specific type of dementia (e.g. Alzheimer's dementia)?
• Consider how early recognition can benefit a person with a possible dementia. How can this benefit their families?