The majority of community nurses will come into contact with people with dementia in their everyday practice. They will have caseloads that are probably dominated by patients with multiple comorbidities, such as diabetes, cardiovascular disease, cerebrovascular disease (especially stroke), frailty, arthritis in all its forms, wounds and conditions requiring palliative care (Olver and Buckingham, 1997; McCrory, 2019). Although many of these conditions are strongly associated with cognitive impairment (Sandylian and Dening, 2019), dementia may be overshadowed by the severity of these conditions. Such overshadowing matters, because community nurses work with large caseloads, often focusing on a specific problem, and cases are mainly demand-led. Therefore, community nurses tend to be reactive care providers (Stuart et al, 2008; McCrory, 2019). Catching hidden dementia may be difficult because other problems, such as a leg ulcer that will not heal, disabling chronic obstructive pulmonary disease or poorly controlled urinary incontinence, are the more visible conditions, are more disabling and demanding, and thus are the targets of the nurse. Thus, the overshadowing of the dementia would make sense (Iliffe, 2019). Similarly, from the patient's point of view, their painful swollen leg, shortness of breath on the slightest of exertion or problems managing their incontinence may be much more significant than their memory loss, muddled thinking or inability to use the TV remote control.
Although it may be anticipated that specialist nurses, such as Admiral nurses, are likely to work with patients who have more complex presentations (Gridley et al, 2019), many community nurses may often see people with dementia who require care and treatment for other comorbid conditions (Iliffe, 2019). District nurses need to look for the overshadowing of dementia, if only because cognitive impairment can reduce a patient's access to, and compliance with, treatments and also may disrupt care plans and, ultimately, positive outcomes from the nurse's treatment and intervention.
Dementia
Dementia is an umbrella term that is used to describe a group of symptoms that are characterised by behavioural changes and loss of cognitive and social functioning. It is caused by progressive neurological disorders (Fratiglioni and Qiu, 2013). There are over 200 subtypes of dementia, but the most common ones are Alzheimer's, vascular, Lewy body, mixed (often a combination of Alzheimer's and vascular) and frontotemporal dementias. There are estimated to be 850 000 people living with dementia in the UK, and if predicted figures relating to incidence and prevalence are realised, this will increase to 1 million people by 2025 and 2 million by 2051 (Prince et al, 2014). While dementia is largely associated with old age, there are approximately 42 330 people below the age of 65 years who are diagnosed with the condition (Prince et al, 2014).
Dementia becomes increasingly common as people age, although it is not an expected outcome of advancing age and may often be seen as a disability (Iliffe, 2019). Iliffe (2019) described the progressive disability of dementia as a combination of two changes: impairment in two or more aspects of thinking (for example, memory loss, reasoning ability and orientation) and problems with performing everyday tasks (for example, self-care and cooking). Similarly, due to its progressive nature, dementia and Alzheimer's disease are now the leading causes of death in England and Wales, accounting for over 12.0% of all deaths that were registered in 2016 (Office for National Statistics (ONS), 2017). This figure was up from 11.6% in 2015, and among those who will live beyond the age of 65 years, one in three will develop dementia symptoms (Matthews et al, 2016).
Recognition and diagnosis of dementia
Awareness of dementia is steadily increasing across the UK due to a national campaign that resulted from the National Dementia Strategy (Department of Health and Social Care (DHSC), 2009) and reaffirmed in the Prime Minister's Challenge (DHSC, 2012). As discussed above, a patient may often present to a community nurse with another comorbid condition, complaint or problem. However, the nurse may often be one of the first points of contact for those who are concerned that they themselves, or a family member, may be exhibiting signs of dementia (Robinson et al, 2015).
The diagnostic rates of dementia have historically been low in comparison to other diseases, such as cancer (DHSC, 2012). The Prime Minister campaigned to increase the diagnostic rates in dementia and set a national target to achieve a rate of 66.7% (DHSC, 2012) of the 850 000 people estimated to have dementia in the UK (Prince et al, 2014). While this target has been achieved collectively across the nation, there is still disparity in rates across some areas in the UK. Data from NHS England (2018) demonstrated that diagnosis rates vary hugely across the country with significant variation across clinical commissioning groups (CCGs), ranging from 52.1% in some areas to 89.8% in others. The National Dementia Strategy (DHSC, 2009) required there to be a dedicated memory service available in every locality across the country. The key components of each memory assessment service are the early identification and referral of people with a possible diagnosis of dementia (which is the responsibility of all health and social care practitioners), and provision of a high-quality assessment, diagnosis and management.
The main diagnostic systems in use, namely, International Classification of Diseases (ICD)-10 (World Health Organization (WHO), 1992) and the American Psychiatric Association's (APA) Diagnostic and Statistical Manual (DSM)-5 (APA, 2013), provide broad criteria to determine whether there is a dementia syndrome present:
Recognising dementia
The public and many generalist professionals associate dementia with a loss of memory, but this is probably most typical of Alzheimer's disease and not necessarily typical of the other types of dementia (Fratiglioni and Qiu, 2013). Even in Alzheimer's disease, other problems with cognitive functioning (like the ability to plan or carry out once-easy tasks) or changes in personality may be more prominent. However, while recognising the early signs of dementia is vital, it is equally important to listen, consider, be observant and use an assessment measure, because many of the changes in a person may be attributable to a range of other events in the person's life (such as bereavement, moving house and getting divorced).
The Clinical Dementia Rating Scale (Hughes et al, 1982) indicates some of the small changes, which, when considered collectively, suggest cognitive impairment (see Table 1).
| Normal cognition | Early dementia | |
|---|---|---|
| Memory | Occasional lapses in memory | Loss of memory for recent events |
| Orientation | Full orientation in time, space and person | Variable disorientation in time and place |
| Judgement and problem-solving | Solves everyday problems | Some difficulty with complex problems |
| Outside the home | Independent functioning | Engaged in some activities but not independently; may appear ‘normal self’ |
| In the home | Activities and interests maintained | More difficult tasks and hobbies abandoned |
| Personal care | Fully capable | Needs some prompting |
Family members and their concerns
A family member may be the first to recognise a problem and register their concerns with the community nurse or the person's GP. They may report a situation that arose, such as an episode of confusion about dates and times, about where the person thought they were, or about leaving the cooker switched on. It may be that they simply feel that something is ‘just not right’ but find it difficult to ‘put their finger on it’. In cases such as these, the permission and consent of the person themselves must be sought, whereby they agree to an assessment or gentle probing to elicit whether they, too, feel there is a problem.
The support of family carers of a person with dementia is key. There are estimated to be 700 000 informal, family carers supporting people with dementia who, while devoting much of their time and energy to the person they care for, save the health and social care economy over £11.5 billion per year (Prince et al, 2014). Nonetheless, while taking account of the proxy's concerns, it is important to see the person themselves, and seek consent for testing their memory after the conversation has been sensitively opened.
Some difficulty with complex problems may be revealed by the list of questions and tasks that the individual brings to the consultation, or specific changes may be reported by a friend or family member, such as uncertainty about using the telephone or struggling with the microwave. Often the individual with cognitive impairment appears to be their normal self, and their impairment is only revealed by chance, when they seek help from a family member to answer a question.
Assessment of cognition
When testing or measuring a person's cognition, a validated, brief and structured cognitive instrument should be used. However, this may not be as straightforward as it seems, as there are many brief cognitive assessment tools available that are targeted for use in primary care, and it is difficult to decide which is the best one to use. Lorentz et al (2002) contrasted and compared brief cognitive measures and concluded that there were three tests that showed the most promise for broad application in primary-care settings. These were the Mini-Cog (Borson et al, 2003), the Memory Impairment Screen (Buschke et al, 1999) and the General Practitioner Assessment of Cognition (GPCOG) (Brodaty et al, 2002). Several others have been developed since the work of Lorentz and colleagues. The National Institute for Health and Care Excellence (NICE) (2018) has included a few more in the recent review of its dementia guidelines (Table 2). The Mini Mental State Examination was previously in widespread use, but it is used less frequently in practice now due to problems associated with copyright restrictions.
| Tool | Description | Authors | Source |
|---|---|---|---|
| 10-CS | 10-point cognitive screener | Manos and Wu (1994) | |
| 6CIT | 6-item cognitive impairment test | Brooke and Bullock (1999) | https://tinyurl.com/y3ujc6d6 |
| 6-item screener | Solves everyday problems | Callahan et al (2002) | https://tinyurl.com/y2ldloog |
| MIS | Memory Impairment Screen | Buschke et al (1999) | https://tinyurl.com/y6kczlok |
| Mini-Cog | Brief, cognitive screening test that is frequently used to evaluate cognition in older adults in various settings | Borson et al (2003) | https://mini-cog.com/ |
| TYM | Test Your Memory | Brown et al (2009) | http://www.tymtest.com/ |
| GPCOG | General Practitioner assessment of cognition | Brodaty et al (2002) | http://gpcog.com.au/ |
Irrespective of the measure used, it is essential that there is consistency across the local team and practice, in order that the score and its meaning is understood across all people involved in the person's care, such as the GP and social care staff.
Consent should be sought at all times from patients prior to the administration of any brief cognitive assessment tool, and patients do have the right to refuse. However, if the nurse believes a patient lacks the capacity to consent and they have assessed their capacity appropriately according to the Mental Capacity Act (2005) (UK Government, 2005), they may consider its administration in the person's best interests. This will require particularly careful handling, and questions may be best asked, and answers elicited, in a conversational style. The assessor must record that they undertook the memory assessment following an assessment of the person's mental capacity. These brief memory assessment measures and screening tools are not diagnostic in their outcome but are an indicator for further investigation or referral. It must also be stressed that if a patient's score on the brief cognitive assessment tool does not indicate a problem with cognition but yet, the patient or someone close to them offers information that would suggest they are having difficulty, the case should not be ignored. Further and fuller assessment is recommended (NICE, 2018) in such cases to fully exclude early dementia or identify other reasons for the difficulties mentioned.
What next?
Following the administration of the brief cognitive assessment tool, it is essential that nurses have a clear understanding of what actions they need to take if further assessment is required. This may vary locally, dependent on whether the dementia screening was carried out opportunistically or as part of a planned appointment where the patient self-presents with concerns about their memory.
Nurses should be aware of local processes and pathways for memory assessment, so they are able to offer patients advice and information on what will happen next and what to expect in the diagnostic pathway. First, the community nurse will record the score in the patient's records; if the score indicates possible problems, then they should inform the patient's GP of the result. Sometimes, people can vary in their performance at certain times of day or if they are unwell from another condition, such as an infection. The nurse may indicate that the memory test will need repeating on another day or that further tests may be needed and what the person can expect, such as blood tests or urinalysis. They need to explain that there are other conditions that can cause the symptoms the patient is experiencing, and so there will be a need to exclude other reversible causes of cognitive problems. Usually, the pathway involves an onward referral to memory assessment services, which then may involve the person having a head scan. While a diagnosis has not yet been made, it is also important to offer the patient and their family information on where they can access specialist support and information relating to dementia, for example, the Admiral Nurse Dementia Helpline (https://tinyurl.com/yy735czb) and the Alzheimer's Society (https://tinyurl.com/yyhh3mp4). The former provides advice and information for professionals as well as families affected.
The diagnosis opens the door in a timely way to post-diagnostic support services that can assist the person with dementia and their family to come to terms with the condition and gain a better understanding of its effects, thereby enabling them to live better with their condition as it progresses. Similarly, earlier diagnosis of dementia will allow the person and their family members to make adjustments in the earlier stages of the illness, and this might also enable them to manage other comorbid conditions more effectively.
Managing multi-morbidity when co-existing with dementia
Multi-morbidity is where two or more medical conditions or disease processes that are additional to an initial diagnosis co-exist and where one is not necessarily more central than the others (Boyd and Fortin, 2010). The diseases are described as being comorbid to each other. Multi-morbidity represents the most common ‘disease pattern’ found among older adults and is characterised by complex interactions of co-existing diseases where a medical approach focused on a single disease does not suffice. People with dementia show high levels of multi-morbidity (Cigolle et al, 2007) and common conditions include cardiovascular disease, diabetes, and musculoskeletal disorders, such as fractures (Sampson and Harrison Dening, 2013). Multi-morbidity profiles of an individual may also include long-term conditions (LTCs), such as diabetes, heart failure and osteo-arthritis. Multi-morbidity in people with dementia can present community nurses with real challenges, as evidence suggests that the presence of other medical conditions can exacerbate the progression of dementia (Bunn et al, 2016). Equally, the presence of dementia can impact on the ability of patients to engage in and self-manage treatment for other chronic LTCs (Browne et al, 2017). Poor management of some of these comorbid conditions can also increase the burden on the carers of people with dementia (Fox et al, 2014).
Health services and systems are often set up for single disease management as opposed to a more holistic approach that considers the multiple health needs of patients and how each impacts on the other. Evidence suggests that people with dementia and comorbid conditions are more likely to have increased health service usage than those without dementia (Browne et al, 2017; Knight and Harrison Dening, 2017). This may also lead to an increase in incidences of unplanned admissions to hospital (Sommerlad et al, 2019). People with dementia often have reduced cognitive and functional reserves and are vulnerable to poor outcomes and adverse events if they are admitted inappropriately to an acute hospital. Poor outcomes include delirium, falls, immobility, incontinence, further functional decline and an increased risk of mortality, and these individuals are more likely to be discharged to a care setting rather than return home (Fogg et al, 2018).
Conclusion
Community nurses are well placed to make positive changes in increasing the identification and screening of patients who may have dementia as part of their everyday contact with their patients. This can be as a direct result of their own patient care, through influencing or educating others within their teams or by changing and enhancing existing processes. The community nurse may be the only health or social care professional that the patient comes into contact with on a regular basis, especially when they are providing care or treatment for another comorbid condition. These professionals are well placed in to engage with and identify patients at an early stage in a cognitive decline. There needs to be greater understanding and awareness of the relationship between dementia other comorbidities or LTCs through early recognition of dementia. In such circumstances, nurses may struggle to support a patient to self-manage their comorbid conditions, so empowerment of family carers is essential.