The clinical nurse specialist role is not clearly defined in the nursing literature. In the absence of an adequate definition, this role is considered to represent a type of nurse practitioner with specialist expertise in a specific medical condition, often built up over years, even decades of experience, who can offer both clinical and social care information and guidance in either a clinical or community-based environment.
Although there are clinical nurse specialists in other terminal and chronic illnesses, they are less prevalent in neurodegenerative conditions, such as young-onset dementia (YoD), defined as dementia with age of onset < 65 years (Harris and Keady, 2004). This situation is perhaps surprising as patients and their families may spend many years living in the community before institutional care is needed, during which time they will have to navigate through a myriad of psychological, social, vocational and financial challenges, often with little help (Spreadbury and Kipps, 2019a; 2019b).
Dementia care provision continues to be structured with an older population in mind (Carter et al, 2018), with younger patients assumed to fit within these services. However, this approach runs the risk of not necessarily meeting the needs of younger patients and their families, and it has frequently been reported in the literature that patients with YoD and caregivers find the available services unsuitable (Beattie et al, 2004; Clemerson et al, 2014; Flynn and Mulcahy, 2013; Lockeridge and Simpson, 2013). In addition, dementia in working-age people poses challenges for clinicians and health professionals around assessment and diagnosis, symptom management and service provision (Spreadbury and Kipps, 2018). Although YoD caseloads may be lower compared with those of late-onset dementia, their clinical and psychosocial complexity may be more demanding, and pertinent outcomes may differ, including mental health, caregiver burden and quality of life (Dixit et al, 2020).
Unlike other outpatient nursing roles that may predominantly involve clinic-based treatment, monitoring and information provision, clinical nurse specialist role for YoD aims at being particularly proactive and pre-emptive (Spreadbury and Kipps, 2018). The role involves making home visits and conducting tasks such as risk assessment, patient and family counselling, managing neuropsychiatric symptoms, linking between health and social care services and mediating on behalf of patients and families (Spreadbury and Kipps, 2018). At present, many patients and their families may be managed by a health professional with a general knowledge of dementia or adult mental health. However, the YoD clinical nurse specialist role has developed with the aim of being a specialism in itself, with expertise in the clinical trajectories and psychosocial consequences of YoD (Spreadbury and Kipps, 2018).
Although nomenclature differs cross culturally, in some countries, a dedicated role similar to a clinical nurse specialist will exist, while, in others, there may be no role but sporadic or improvised support; in yet others, there may be interest in establishing such a role. In the literature, a role similar to what is referred to as a YoD clinical nurse specialist in the UK is mentioned, but there is almost no description about the role (Spreadbury and Kipps, 2018; 2019a).
The purpose of the present study is to raise awareness of the clinical nurse specialist role and of its potential as observed in a UK health service context. The study did not intend to be a full comprehensive account but instead a qualitative description of a seldom-observed nursing role that does not exist in the vast majority of regions and countries but that may be expanded in the future as public awareness of YoD increases.
The aims of the study were (i) to investigate the role of the YoD clinical nurse specialist by drawing on interviews conducted with two nurse specialists discussing YoD care; (ii) to identify and describe the care they provide and the approaches used in providing care; and (iii) to discuss the skillset needed for the role.
Questions guiding this analysis included: (a) what is the range of activities that the clinical nurse specialist role encompasses? (b) What is the potential added value of the clinical nurse specialist role in additional to a clinical appointment? (c) Does the role need to be carried out by a health professional with specialist expertise in YoD or could a general health professional fulfil the role?
Method
Investigation of the clinical nurse specialist role formed part of a broader study to examine health professionals' perspectives on YoD care. A full description of the methodology is reported previously (Spreadbury and Kipps, 2018). The study received NHS ethics approval.
Participants
The participants were two YoD nurse specialists. Their mean age was 54 years, and both were female. One participant worked in a dedicated YoD health and social care service and the other, in a hospital clinic specialising in the assessment and treatment of cognitive disorders among younger people. Both had specific experience of working with people with a range of dementias that present in mid-life, including typical and atypical forms of Alzheimer's disease, frontotemporal dementia, Huntington's disease and parkinsonian dementias. The participants were based in two separate regional NHS trusts, one in the south of England and one in the east, and they did not know one another. Both had similar career backgrounds, and both had started their early careers in general nursing and then moved into mental health nursing. As the YoD nurse specialist role appears relatively new, both had been in their respective posts for less than 3 years and had little or no knowledge of somebody who performed the same role as they did.
Design
The study used a case study design and aimed to investigate in depth and describe the clinical nurse specialist role in YoD care. The study drew primarily on qualitative in-depth semi-structured interviews.
Materials
A semi-structured interview schedule was created to elicit discourse about the participants' experience of multiple aspects of YoD care, and included the following areas: present job/role; contact/interaction with YoD patients and caregivers; obtaining a diagnosis; routine clinical care; post-diagnostic support and service provision; the most salient issues related to overall care; the role of research; service user outcomes; and quality of life. At the end of the schedule, participants were able to add comments on anything discussed during the interview. A self-report form was created to obtain biographical and occupational information.
Procedure
Each participant provided informed consent and was interviewed in a quiet room at their place of work. The interviews lasted between 1 hour and 20 minutes and 2 hours and 22 minutes. Interviews were recorded using a digital voice recorder and transcribed.
Analysis
Interviews were listened to and read through several times. NVIVO version 10 was then used to apply codes to the interviews describing the different activities and thoughts of the clinical nurse specialists about their role. Codes were then grouped into overarching related themes. An early version of the results was presented at an in-house cognitive research team meeting, and feedback further informed the analysis and discussion. The paper was sent to participants for review, feedback and accuracy verification.
Results
Three themes were established describing the role of the clinical nurse specialist in YoD care: (1) areas of care addressed; (2) approaches to providing care; and (3) attributes needed of a clinical nurse specialist service.
Areas of care addressed
Clinical nurse specialists address a broad and diverse range of areas that can be grouped as follows: (1) YoD sub-type symptoms/presentation; (2) psychosocial problems; (3) mental health and physical nursing; (4) caregiver burden/stress; and (5) administrative issues.
Arguably, the area that requires the most specialist clinical knowledge is YoD symptom presentation. This area may be particularly complex because YoD involves a number of subtypes with specific clinical features. In addition to monitoring and assessing memory and cognitive disturbances, clinical nurse specialists may also have to monitor challenging behaviour, mood changes, personality changes and problems eating and sleeping. The situation may be made more complex because, with the passage of time, there can be worsening of symptoms and the development of new clinical features. A consequence of developing dementia in mid-life is that it creates a number of psychosocial problems that may need to be addressed, for example, those related to family and interpersonal relationships, finances, children and employment.
Clinical nurse specialists will likely interact with patients experiencing mental health problems or psychiatric disorders and physical ailments. It may be advantageous to distinguish between mood changes that are part of the clinical features of dementia from those that are a secondary consequence and may be receptive to treatment. Their role includes the monitoring of medication introductions, changes, side-effects, interactions, tolerance and adherence, along with consideration given to any physical comorbidities that may worsen dementia symptoms.
Another significant area addressed is related to the burden, difficulty or stress experienced by the caregiver. There may be discussions around personal coping strategies that can mitigate the stress of caregiving (e.g. how to respond in different situations) and community resources that can be drawn upon (e.g. respite, day care, home care).
Finally, there may be several administrative and planning-for-the-future issues to address. There may be discussion about state benefit entitlements, wills, long-term power of attorney and driving, as well as discussion about events that may occur in the future (e.g. the need for residential or end-of-life care).
Approaches to providing care
The clinical nurse specialist role involves a number of different approaches to delivering care, but among the most fundamental include: (1) conducting home visits; (2) meeting with service users separately; (3) providing service users with personal contact details; and (4) linking with other healthcare/social care services and meditating on behalf of service users.
The role may involve more time spent interacting with service users in the community than in a clinic. Clinical nurse specialists often visit service users in their own home and dedicate time to assessments and discussions of salient information. Discussions may involve information provision, clarification of information, explaining information and answering questions. These home visits may be beneficial for several reasons; for example, they allow for not just a dyad but a wider family-based approach to delivering care, whereby the needs of other family members can be assessed. It can be difficult or stressful for service users to attend clinical appointments, and homes visits offer a more relaxed environment. There is less time pressure to complete appointments; they allow for any contrasts between home and clinic presentation to be observed. Finally, they allow for the evaluation of home modifications and community implementation needed. Having the opportunity to interact with service users in the community allows clinical nurse specialists to meet with the service users, often caregivers or other family members, separately. This individual-based approach has the benefit of allowing service users to talk candidly about their experience and receive information or guidance tailored to their specific needs.
An additional approach to providing care involves clinical nurse specialists providing service users with their personal contact details (e.g. telephone numbers, email addresses), which they can use if they need information, have questions or require help. This approach allows clinical nurse specialists to step back when they are not needed to prioritise their care loads and respond when they are needed. When contacted, it is important that they respond promptly and assertively to maintain the trust and confidence of service users.
An alternative approach to delivering care involves linking with other health services and professionals and mediating on behalf of service users. In monitoring and assessing patients, clinical nurse specialists may find it necessary to involve other health professionals, such as social workers, occupational therapists and speech and language therapists. They may also want to communicate significant changes in symptoms or modifications needed to medication with other health professionals, such as GPs, neurologists or psychiatrists.
Attributes that a clinical nurse specialist service needs
A number of desirable attributes for a clinical nurse specialist service can be discerned. Among the most salient include: (1) access to the same clinical nurse specialist throughout; (2) receiving timely care; (3) fostering service user confidence; and (4) longer-term support or reassurance.
There should be consistency in the clinical nurse specialist role that service users have access to throughout their experience; that is, service users should have access to the same clinical nurse specialist from diagnosis to end-of-life care. This should be somebody who has got to know the service users, established a relationship of trust and who knows the details of their dementia sub-type and psychosocial circumstances. It should not be the case that when patients reach 65 years of age, they are passed onto an older peoples' team, nor should they have to keep repeating the details of their circumstances and experience to new health professionals. It may also be advisable that patients not be discharged even if their circumstances appear stable. Instead, due to the progressive nature of YoD, these individuals should simply be noted as not requiring acute care at the present time.
In recognition of the fact that YoD is associated with a range of chronic and acute psychosocial problems, there is an emphasis on delivering care in a timely manner. A fundamental objective of the role is to pre-empt and de-escalate problems from reaching crises and overwhelming other services often unprepared to deal with YoD. In this way the role adopts an approach that is proactive and preventative rather than reactive. When contacted, clinical nurse specialists will make a point of responding to service users as swiftly and assertively as possible, and not to leave them waiting for longer than necessary and allowing their problems to worsen.
There is increasing recognition of the complexity of the diagnostic process of YoD. For some service users, the process may take a long time and involve consultations with a number of specialists, as well as a period of uncertainty. When the diagnostic period is experienced as difficult, it may result in reduced feelings of trust or confidence in the healthcare service. In the post-diagnostic period, the sooner the trust of service users is established, a relationship is formed and the clinical nurse specialist has begun to know the family, the more they can do to help service users. Among the attributes that can help to foster user confidence include demonstrating knowledge and providing information specific to the dementia sub-type, showing an appreciation and awareness of the service user's psychosocial circumstances and responding assertively to the service user's requests.
The dementias seen in younger patients will be, in the vast majority of cases, incurable but may be perceived or experienced as trajectories made up of periods of stability and progression (Spreadbury and Kipps, 2018; 2019b). In this context, clinical nurse specialists may find themselves, at times, working acutely and intensely with service users to remedy problems and then not need to intervene again for months or years. In other cases, they may find themselves seeing the same service users on a regular basis for an indefinite period. In addition to addressing changes in dementia symptoms, clinical nurse specialists may also be called upon to comment on changes in physical health and mood and psychosocial problems. On many occasions, they may simply find themselves drawing on their skills of empathetic listening, providing reassurance and talking through the concerns of families.
Discussion
The clinical nurse specialist role encompasses a broad and diverse skillset that can be postulated as a four-corner-stone paradigm involving: (1) knowledge of YoD and the associated psychosocial problems; (2) mental health nursing; (3) physical health nursing; and (4) excellent interpersonal skills.
Knowledge of YoD and associated psychosocial problems
The clinical nurse specialist role requires specialist knowledge of YoD sub-types, their clinical features and possible trajectories. Information and guidance given to service users must be correct and specific to the dementia sub-type. It should not be the case that service users are given, for example, information relevant to Alzheimer's disease when the patient has frontotemporal dementia. They should have an understanding of how dementia affects the brain; knowledge of dementia-specific medications, how they work, and their side-effects; and an awareness of age-appropriate health and social care resources in the region that may be of use.
The quality of almost every aspect of life is likely to be negatively affected by the development of dementia in middle age, and clinical nurse specialists will benefit from having a broad knowledge and understanding of the complicated psychosocial problems that can arise. Common areas of difficulty can include employment, finances, parenting, future aspirations, stigma, disclosing dementia to others and maintaining healthy interpersonal and social relationships.
Clinical nurse specialists in YoD will also need to provide information on a broad range of dementia-specific areas. They may have to provide information or clarification about the diagnosis or about what other health professionals have told service users, or offer a basic explanations of how dementia is affecting the brain. They will also have to provide information on administrative matters that service users may be unprepared for, or have given little thought to, such as lasting power of attorney, wills and benefit entitlement.
Mental health nursing
The role will usually involve monitoring for changes in mental health, such as signs of depression, anxiety and, in some cases, paranoia or even psychosis that may be secondary to dementia and responsive to treatment. In caregivers, it may be necessary to monitor for signs of stress or burden, which if left untreated, may develop into mental or physical health problems. If there are children or teenagers involved, there may be a risk of self-harm, recklessness, difficulty at school or college, or substance abuse (e.g. tobacco, alcohol, recreational drugs). Clinical nurse specialists will need to be able to recognise signs of mental health problems and know the appropriate pathways for treatment.
Physical health nursing
Clinical nurse specialists will assess and monitor the physical health of patients. They will be able to take into consideration lifestyle, diet, exercise, comorbidities and medication, as well as how these may affect clinical features of dementia. If there is a problem, they can make recommendations about interventions that may help improve the situation.
They will also consider health and life-style factors related to caregivers, how these impact on care-giving ability and what measures can be implemented if caregivers are struggling.
Interpersonal skills
Clinical nurse specialists work closely with patients, their primary caregivers, and, frequently, the wider family, including children, and recognise how the untimely development of dementia impacts on the lives of all those affected. They dedicate significant time to listening to service user concerns and difficulties, talking through issues, and providing guidance and information. In the process, they draw on skills in empathy, sensitivity, problem-solving and communication.
In conducting home visits, clinical nurse specialists can never be certain what scenario they may be presented with, and it may not be uncommon to witness dementia presentation involving disinhibited and verbally inappropriate behaviour as well as domestic arguments. Clinical nurse specialists will frequently use skills in handling challenging dementia behaviour, managing uncomfortable social situations and conducting risk assessments. They will also need skills in verbal and written communication when liaising with other health professionals, for example, in communicating changes in patient symptoms, when involving other services, and in making recommendations.
Place within the health service
In the UK, at the time of writing, the role may be perceived as short-term or even precarious. In times of financial and resource surplus, or where a champion sees benefit, this type of role may be promoted, while, in times of deficit, budget cuts or changes in decision-makers, it may be easily dismissed. This situation may be because the role is wrongly perceived as superficial or superfluous, as it only serves a small population within the immediate local area, and because the benefits are difficult to quantify. There is frequently a need to work across health and social care administrative boundaries and usually over a relatively wide geographical region, which may complicate resourcing responsibility for such a role.
Nomenclature
There may be some opposition the title for this role. Some may prefer ‘nurse specialist’, ‘care co-ordinator’, or something else altogether (Spreadbury and Kipps, 2018; 2019b). However, if the role sounds too administrative or bureaucratic, it runs the risk of not carrying significant weight with clinicians as they try to make recommendations to seek assistance, nor will it inspire confidence of service users. If the present title is not considered satisfactory, it would be interesting to know what nomenclature would be more suitable.
Potential added value
The role offers potential value over routine clinical appointments. It offers service users quick and easy access to somebody with a clinical understanding of the dementia sub-type, to whom they can ask questions, and from home they can obtain information and seek guidance without the need for arranging a clinical appointment. Home visits permit the naturalistic observation of how service users are managing and of what health or social care interventions are needed, offers service users more time to talk through concerns and provides contact with a clinician between sometimes lengthy waits for a clinical appointment. Finally, the role can facilitate the better management of service users. Health and social care needs can be managed by clinical nurse specialists in the community where the delivery of care can be mobilised quickly with the aim of pre-empting problems before they occur, while any medical needs continue to be addressed in clinic.
KEY POINTS
- The clinical nurse specialist role (CNS) in young-onset dementia (YoD) is a seldom-observed nursing role that may become more prevalent in the future as the incidence of YoD is increasing
- CNSs need to be knowledgeable about dementia sub-type presentations, psychosocial difficulties arising from YoD, mental health and physical nursing, caregiver burden and health and social care systems
- CNSs use different approaches in delivering care, including conducting home visits, meeting with service users separately, providing service users with personal contact details, linking with other health and social care services and meditating on behalf of service users
- Useful attributes of a CNS service should include access to the same CNS throughout the course of dementia, timely care, fostering confidence in service users and providing long-term support and reassurance
CPD REFLECTIVE QUESTIONS
- How can the needs of patients with young-onset dementia (YoD), caregivers and families best be addressed in the community and by whom?
- How can the YoD clinical nurse specialist (CNS) role be effectively implemented and evaluated within existing models of routine clinical care?
- What should be the experience, skill-set, and training needed for a YoD CNS?