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Case Management Dementia Care

United Kingdom and Europe

Harper, Phil, PGDip

doi: 10.1097/NCM.0000000000000366
Departments: Case Management Matters

Phil Harper, PGDip, is currently an associate lecturer at the University of Worcester and a doctoral candidate at Manchester Metropolitan University exploring care staff's understanding of the needs of an LGBTQ+ persons living with dementia. He has worked in dementia care for 7 years; previously, he worked in hospitals, charitable organizations, and most recently care homes. Mr. Harper holds a bachelor's degree in Health Science from the University of Worcester and a postgraduate diploma in practice development in dementia care from University of Cumbria. He has been involved in the development of dementia training for hospitals and care homes.

Address correspondence to Phil Harper, PGDip, 10 Forest Close, Worcester, UK (

Editor's Note: Although individual countries use vocabulary that may seem foreign to readers, the core principles of case management practice, evidenced by the Standards of Practice for Case Management (2016), provide meaningful guidance for case managers worldwide.

Disclaimer: The information contained in this department is for educational purposes only. It is not legal advice, which can only be given by an attorney admitted to practice in the jurisdiction/state(s) in which you practice.

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The author reports no conflicts of interest.

Evidence for case management in dementia care in the United Kingdom is inconclusive; however, case management has been successful in other countries such as the Netherlands. An important aspect of case management is working collaboratively; this article explores the importance of multidisciplinary working in dementia care, ensuring that persons living with dementia and their families are supported appropriately. Developing more cost-effective methods of caring for people living with dementia is essential, as dementia costs the economy £26 billion and this is only expected to increase (Prince et al., 2014). There is considerable evidence for the aging population having a significant impact on the health and social care sector. Increased longevity has meant a higher prevalence of chronic conditions such as dementia. The Alzheimer's Society's most recent report states that one in six people older than 85 years will develop a dementia: compared with one in 14 older than 65 years (Prince et al., 2014).

According to Kontis et al. (2017), the worldwide life expectancy age is expected to rise to 90 years by 2020. This projection demonstrates a large increase and therefore would lead to an increase in people diagnosed with dementia. The cost of dementia to the United Kingdom is £26 billion (Prince et al., 2014). It is therefore clear that this will have significant impact on the health and social care sector. However, up to two thirds of social care costs are met by informal caretakers: family and friends (Price et al., 2014). Working habits and home life have changed in recent years. For example, there are more working families and they are working longer hours (Hochschild & Machung, 2012). It is reasonable to predict that this would cause more of a reliance on the health and social care sector in the care of the elderly. This shift would change the dynamics and costs to the country and potentially cause even more strain on the National Health Service (NHS) and social care. Therefore, we need a more effective and sustainable method of managing this large proportion of the population. According to Murphy (2004), this is case management and dementia management. For a number of years, the Department of Health has been committed to develop this method of supporting people with long-term conditions to help alleviate the financial burden on the NHS.

In the United Kingdom, case management seems to have no distinctive definition; however, it can be described as including “identification and outreach, comprehensive individual-based assessment, care planning, care coordination, service provision, monitoring, evaluation and meeting individual needs” (Sandberg, Jakobsson, Midlöv, & Kristensson, 2014, p. 14). The Department of Health has established in policy what it wants the outcomes of case management to be. It states that it should focus on care coordination, education, advocacy, and psychosocial support (Sargent, Pickard, Sheaff, & Boaden, 2007). In the United Kingdom, case management has had a difficult journey in its implementation (Iliffe et al., 2017). Difficulties such as lack of experience of leaders and limited evidence of its effectiveness have hindered the success of case management in the United Kingdom (Iliffe et al., 2017). Even though historically there is limited credible evidence of case management, there has been anecdotal evidence of case management's success in improving service recipients' experiences of health care (Iliffe et al., 2017).

In the case of persons living with dementia, those persons may have been diagnosed by their general practitioner or they may have been referred to a memory clinic for a specialized team to diagnose the dementia. According to Nasreddine et al. (2005), the referral to a memory clinic is best practice, as it allows a multidisciplinary team approach for a more accurate and thorough diagnosis, which includes highly specialized professionals and uses more accurate assessment tools.

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Impact on Case Management Practice

After diagnosis, it is essential for the person to receive support. Unfortunately, this is not always the case. This is detailed in the National Dementia Commissioning for Quality and Innovation (CQUIN) Policy, an incentive system based on quality improvement (Burns, 2015). According to Lethin et al. (2016), postdiagnosis support is lacking. This often causes persons with dementia and their loved ones to feel alone. According to Christie (2015), there is evidence that effective case management in the community in short-term (6 months) cases reduces the number of care home (referred to in the United States as nursing home) admissions. However, there is no evidence that case management reduces care home admissions in the longer term (after 12 months) (Christie, 2015). Most of the available studies, however, were fairly old, with one being 20 years old (Christie, 2015). Therefore, newer research into case management in community dementia care is needed to include advancements in practice.

Newer practices in dementia community care include the use of the community Admiral Nursing model. This model is an approach to case management that supports persons living with dementia and their loved ones. The Admiral Nursing model is recognized as a model of case management in the United Kingdom and consists of three stages: triage, casework, and discharge (Dening, Aldridge, Pepper, & Hodgkison, 2017). It is hoped that the Admiral Nurses offer the support needed and ensure that a person's needs are appropriately met, especially postdiagnosis support (Dening et al., 2017).

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Dementia Care in other Countries

In the Netherlands, a person living with dementia is discharged from case management at death or care home admission (Dening et al., 2017). In the Netherlands, care home staff are highly skilled and trained. Unfortunately, in the United Kingdom, this is not always the case (Latham & Brooker, 2017). In the United Kingdom, the need for specialized dementia case management for persons living with dementia in a care home is therefore still necessary and often still relied upon (Dening & Hibberd, 2016).

In 2010, case management in dementia care was underresearched and the results have also been mixed in regard to the effectiveness of case management in dementia (Pimouguet, Lavaud, Dartigues, & Helmer, 2010). The study did identify that the majority of the research that detailed negative outcomes was of poor quality (Pimouguet et al., 2010); therefore, there remains a need for more high-quality research to be conducted, focusing on the impact of case management in dementia care to arrive at a credible decision on the effectiveness of case management.

More recently, work has been conducted regarding case management in dementia, such as the Cochrane Review of Case Management in Dementia Care, where evidence demonstrated that people living with dementia had positive outcomes (Cochrane & Fitzpatrick, 2005). Another approach is Nurse Lead leadership that was adopted as a case management method. Because of recruitment difficulties in the midst of the nursing shortage, this method unfortunately has struggled to provide positive outcomes; therefore, its viability has been questioned (Anderson, 2018).

The Kaiser Permanente (KP) integrated care model is a case management model used in the United States and is based on the service provision provided by the KP private health care organization. The KP model aims to meet the needs of individual groups by breaking down services by their grouped need (Cherry et al., 2004). According to Cherry et al. (2004), the KP model is beneficial in dementia care. It is important for people living with dementia to be supported by a multidisciplinary team and not just primary care, which is an aim of the KP model by ensuring the needs of an individual are met (Cherry et al., 2004). The KP model uses social workers/case managers to provide postdiagnosis support (Cherry et al., 2004). This social worker support is vital for persons living with dementia, as it can stop a person from feeling like he or she has no access to support.

According to Grand, Caspar, and MacDonald. (2011), social workers assist in the management of complex chronic conditions such as dementia. The case managers in this model, many of whom are social workers, look at the bigger picture, including career support, financial support, and crisis management (Grand et al., 2011). This holistic approach is beneficial for persons living with dementia, as it will support the individuals through their whole journey. According to Cooper (2017), there is a national shortage of specialist social workers; therefore, social workers individual caseloads may be very large and hard to manage. This might, therefore, lead to long waits between visits and reviews.

Another model that is relevant to dementia care is the EverCare model of case management. The EverCare model is a nurse-led model that has been adopted in the United Kingdom to reduce hospital admissions for a person with long-term conditions (Hutt, Rosen, & McCauley, 2004). In the EverCare model, an important principle is that the least restrictive method of care should be followed (Lipton, 2012). This is particularly relevant for persons living with dementia, as, according to the Mental Capacity Act of 2005 (MCA), they may be deemed to not have capacity (Lipton, 2012). One of the five guiding principles of the MCA is that a best interest decision should always be the least restrictive (Lipton, 2012). The least restrictive clause within the EverCare model has been adopted to avoid hospital admission. This also is considered best practice for a person living with dementia, as new environments can cause more confusion and upset (Andrews, 2015).

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The Role of Therapeutic Intervention

The EverCare model also includes the need for pharmaceutical interventions to be reviewed (Lipton, 2012). In dementia care, best practice is that pharmaceutical interventions should always be the last resort (Latham & Brooker, 2017). These correlations, therefore, demonstrate that the EverCare model is supported by best practice for a person living with dementia. The EverCare model also aims to take a whole person approach (Lipton, 2012) that also fits in with person-centered care, which is best practice in the United Kingdom (Brooker & Latham 2015; Kitwood 1997). A way to adhere to person-centered care is through care planning. According to Ross, Goodwin, and Curry (2011), care planning is essential for case management. Care plans are essential in meeting the needs of service users (care recipients) and ensuring that their individual needs are met. The EverCare model has very inconclusive evidence, and it has not been proven to reduce hospital admissions as was its initial intent, but it has demonstrated some evidence of improving the quality of care (Hutt et al., 2004).

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Successful Case Management in other European Countries

Case management in dementia care has been successful elsewhere in Europe. In the Netherlands, case management has been adopted to provide more successful person-centered care (Iliffe et al., 2017). A linkage model has been developed in the Netherlands, which utilizes the intensive case management model and joint agency collaboration (Iliffe et al., 2017). There is anecdotal evidence that this approach does improve the quality of life for people living with dementia and their families (Iliffe et al., 2017). The model focuses around three axes: brokerage versus direct care provision; supporting autonomy versus professional control; and saving money versus answering needs. This model demonstrates a shift toward case management dementia care. This could possibly be due to its positive outcomes in other European counties.

The KP approach of breaking down the population has been adopted and adapted by The King's Fund; this model has been developed into a pyramid model. The model is called the combined model and assists in decision making in complex cases (Wennberg et al., 2015). Case management is at the top of the pyramid for complex needs; next, there is illness management for high needs; next, self-management for chronic patients; and finally prevention for the general population (Wennberg et al., 2015). This model, compared with previous methods, which only focus on people at high risk, aims to support a whole population and help the NHS meet people's needs more effectively (Wennberg et al., 2015). There is a focus in the combined model on prevention for the general population; this prevention and public health focus are predicted to save the NHS (Wennberg et al., 2015). Therefore, it is hoped that this tool in managing long-term conditions would be economically desirable, as well as operational. In the National Dementia Strategy, there is a focus on the prevention of disease as well as support for a person living with dementia (Banerjee, 2010). This national policy therefore demonstrates how this combined pyramid model is supported by policy and national campaigns. The money saving, bottom of the pyramid, is often hard to promote in dementia care, as there is little evidence of how to prevent dementia (Livingston et al., 2017). However, there are public health campaigns to help improve lifestyle that may reduce the risk of certain dementias, such as vascular dementia caused by strokes (Roman, 2005).

Multidisciplinary and integrated working is essential in dementia care, as no singular profession has all the needed expertise and skill to support a disease as complicated as dementia (Grand et al., 2011). A person living with dementia's behavioral changes can sometimes be difficult to manage within a care setting; this is where collaborative working is effective. Pharmacists, case managers, liaison nurses, psychiatrists, and social workers are all involved in decision making and supporting the person living with dementia. An example of where professionals are successfully working collaboratively is when a person living with dementia may display sexually disinhibited behaviors. A psychiatrist can work closely with a pharmacist to review the person's medication. The liaison nurses can work with the care home staff to help with coping mechanisms to manage the individual's behavior effectively. The individual's case manager and/or social worker can also be involved in the meetings and follow-up on the changes made. This example has demonstrated how multidisciplinary and collaborative working can lead to effective case management of symptoms of a person living with dementia. Although the importance of the multidisciplinary approach is evidenced, methods of working well as a team is lacking in evidence base and instruction (Sims, Hewitt, & Harris, 2015); therefore, teams might not work effectively together.

Behavior change theory is often used as an evidence base for the effectiveness of case management, especially in the case of geriatric care (Enguidanos, 2001). Behavioral change models help achieve the same goals that case management is set out to achieve; this includes making health care provision more efficient (Enguidanos, 2001). By changing people's behaviors and views, behavior change can help meet the needs of the general population as defined in the combination model (Wennberg et al., 2015).

A relevant theory that is often used in psychology and community service is the theory of planned behavior (Enguidanos, 2001). This theory consists of three components: behavioral beliefs, normative beliefs, and control beliefs (Enguidanos, 2001). This model is relevant to persons living with dementia, as the condition can be a barrier to their ability to change. This would fit in with the control component of the planned behavior theory (Enguidanos, 2001). In the case of persons living with dementia, we have to support them to adapt their behavior and meet their health care needs. An example is that persons living with dementia may be at risk of malnutrition; because of their dementia, they may find understanding or remembering the need to eat difficult (Herke et al., 2018). Therefore, need to encourage persons living with dementia to eat and make sure they maintain satisfactory dietary intake. Persons living with dementia may probably not be able to self-manage their diet; therefore, they would be at higher risk and benefit from case management and need support from multidisciplinary professionals.

According to Ajzen (2015), the theory of planned behavior has been previously discredited because of the lack of evidence of its success. Ajzen (2015) states that the studies that have evaluated and discredited the theory were not credible and the evidence is not conclusive. This does mean that the theory still can be credible, but it is hard to evaluate.

It has been argued that following just one model is not the most efficient way to change behavior (Enguidanos, 2001). Another model that can work alongside the theory of planned behavior is the transtheoretical model of change. This consists of six stages and ends in the termination stage where a person has mastered the new behavior (Enguidanos, 2001). A person living with dementia often finds learning new information difficult (Enguidanos, 2001). Therefore, this staged learning of new behaviors would be difficult for a person living with dementia. However, caregivers are helpful in creating a simple routine, which for people living with dementia can be helpful (Canevelli et al., 2016). This, therefore, may help teach a new behavior and work through the transtheoretical model.

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The evidence base for case management in dementia care may remain inconclusive in the United Kingdom; however, case management has been successful in other countries. This demonstrates that case management can have positive outcomes. The core of case management, as modeled by the Standards of Practice for Case Management (Case Management Society of America, 2016), provides guidance for applications of case management in all settings with a collaborative multidisciplinary approach, ensuring that persons living with dementia and their families are supported appropriately.

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