Addressing Dementia Care in Brent

Introduction

This essay aims to critically explore meeting health and social care needs of client group with long term conditions within a defined geographical community in the United Kingdom and strategic plans to enhance wellbeing using a social model of care. To explore this topic, the essay focuses on older adults’ group with dementia in London Borough of Brent. This essay begins with an analysis of the epidemiological data of Brent. The health and well-being of the older adult population will be discussed with a brief overview of dementia as a long-term condition using trajectory framework. Then, a critical review of barriers to engagement with healthcare and strategies to overcome such barriers will be highlighted, with healthcare dissertation help proving beneficial for in-depth analysis. Furthermore, the impact of health policy on long term conditions and health inequalities will also be evaluated. The essay concludes by summarising the key points with relevant recommendations. The prevalence of long-term conditions rises with age affecting about 50% of people from the age of 50 years and 80% of those aged 65 years and over (Bardsley et al., 2013). Evidence reveals that the ageing population is on the increase in the United Kingdom (Office of the National Statistics, 2016) and increasing complex care needs characterised by comorbidity, mental health challenges and social deprivation (Kuluski et al., 2017). In order to improve and meet the health and social care needs for client group within this category, there is a need to switch from reactive disease-focused fragmented model of care to a more proactive, holistic and person-centred care (Bardsley et al., 2013). This holistic approach integrates health and social care to support clients with complex care needs.

Discussion

Demographic distribution and Epidemiology data of Brent Population

Brent is a multi-ethnic borough located in the north-west region of London. As of 2016, Brent’s population is characterised by young people aged between 20 and 39 years representing 35.1% of the whole population, while 11% of the population is made of people 65 years and over (Office of National Statistics, 2011). In Brent, the white group are the majority with 33%, while 66.4% of the population distributed among the Black, Asian or other minority ethnicities (BAME). The prevalence of dementia in Black African-Caribbean and South-Asian population is greater and the age of onset is lower than the white group (Joint Strategy Needs Assessment (JSNA) Brent, 2015). NHS Brent CCG (2015) reveals that 55.1% of older adults had mild dementia, 32.7% had dementia of moderate severity and 12.2% had severe dementia. The Dementia Prevalence Calculator shows that in NHS Brent CCG the dementia diagnosis rate is 71% which is significantly higher than England 67.5% in 2018 (Public Health England, 2018). The statistics indicate that dementia care is in a better position in Brent compared to England. (Refer to Appendix 1)

Long Term Condition and Trajectory of Dementia

A long-term condition is any health condition that can be managed using medication and/or other forms of interventions because there is no current cure (McVeigh, 2016). More than 15 million people have long–term conditions for which there is no cure and 70% of funds for health goes into management of LTC (Public Health England, 2017). The prevalence of people with LTC is estimated to increase to about 18 million by 2025 if the current situation isn’t mitigated (British Medical Association, 2016; Barnett et al., 2012; Kings Fund, 2014). Dementia is a long-term incurable condition associated with functional deterioration in memory and other reasoning skills, severe enough to decline the ability of an individual to perform daily activities (American Psychiatric Association, 2013). Alzheimer’s disease is the most common form of dementia and accounts for 60% to 80% of all cases; followed by vascular dementia. Alzheimer’s is characterised by formation of microscopic structures in the brain impairing brain function (Jellinger, 2008). 850,000 people of all ages were estimated to be living with dementia in the United Kingdom as of 2014 (Prince et al., 2014), and the economic cost was estimated at £23.6 billion annually. Dementia is more prevalent in the older population, with 20% of men and women in their eighties, compared with 0.3% of men and women between 60-64 years (British Medical Association, 2016). While age is an important factor, it has been found that social inequalities and environmental effects play significant roles in the prevalence and progression of dementia. For instance, in Brent, people in the lowest social class have 60% higher prevalence and a corresponding 30% higher severity of the conditions compared to the highest social class (Department of Health, 2012).

The eight steps Trajectory Framework by Corbin and Straus (1992) and use of Global Deterioration Scale (GDS) (Reisberg et al., (1982) (Appendix 2) describes the dementia trajectory stages based on cognition and function which in turn offer an understanding of individual needs and best treatment approach at different stages and phases of dementia. Corbin and Straus (1991) referred to the first stage as pre-trajectory phase. At this stage, genetic factors, lifestyle behaviours (smoking and alcohol) and influence of wider determinants of health such as the environmental and social factors might place the older adults at risk (Appendix 2). Thus, the need for nurses to provide health education about prevention of modifiable risk factors and behaviour drawing from the evidenced-based behaviour approach ‘Making Every Contact Count' (MECC) (PHE and HEE, 2016). Dementia emerges with manifestation of symptoms (crisis phase) and application of active intervention (acute phase) may result in stability of the patient (stable phase). However, for older adults, chronic stressors have a negative impact on almost all aspects of immune functioning (Seyle, 2013; Margereson and Trenoweth, 2010) with a new attack capable of causing death. For formal diagnosis of dementia, nurses conduct a cognitive assessment which is the thirty question Mini Mental State Examination (MMSE) (Folstein et al., 1975), although there other tools available (NICE, 2013). The MMSE test client’s basic knowledge on use of language, time and place, basic motor skills and arithmetic. While providing an indication of the problem and its extent, the nurses present the case and result from assessment to the Multidisciplinary team for collaborative clinical decision in relation to diagnosis and management plan.

At different stages of dementia, individuals’ experiences differ. Therefore, approach to care must be person-centred (King’s Fund, 2014) taking into account the different levels of progression or dementia trajectory which could be mild, moderate or severe (Brooker, 2003). While there may be variability in the course of illness, using GDS can be a useful guide to understand significant transitions in the dementia trajectory. For the older adults in Brent with dementia, what becomes clear is that at the trajectory phase (Appendix 2) were the first onset of symptoms present, several integrated factors influences how these population groups access the health services in Brent. A qualitative study in Southeast England by Memon et al. (2016) found two broad themes as perceived barriers to accessing mental health services: first, personal and environmental factors which include cultural identity, negative perception of and social stigma against mental health, and low economic status. These barriers reflect the need to create public awareness, improve access to key prevention, screening programmes, and to expand these services in response to the rising levels of older adults with dementia (CCG Brent, 2017).

Second, the factors influencing the relationship between health provider and service users; which included the effect of long waiting times for initial assessment, ineffective communication between providers and service users, cultural naivety, insensitivity and discrimination towards the needs of service users from BME. For interventions geared towards greater engagement across the socio-economic spectrum, additional thought needs to be given to solutions that cater to health consumers with poor functional and health literacy(Leung et al., 2010). For the older adults in Brent, pursuit of health services becomes even harder with the bidirectional relationship between physical and mental health problems, whereby individuals with mental health problems like dementia are at an increased risk of developing physical health problems (British Medical Association, 2016; Community Action for Dementia (CAD), 2015).

Barriers to engagement with healthcare among patients with long-term condition

In Brent, it is reported that till March 2015, 1771 individuals were seen to be living with dementia. It was reported that £270,407 being planned to be invested in providing extra care to the elderly patients who are affected by dementia in the borough to help them be specialised to live on their own in houses (www.brent.gov.uk, 2015). These statistics inform that effective initiatives are being taken in the borough to assist elderly dementia patients. However, while offering care various barriers are experienced in relation to the patients suffering from dementia as a long-term condition. This is evident as some of the elderly patients in Brent after being diagnosed with dementia were seen to show denial to accept they are suffering from the disease (www.brent.gov.uk, 2015). The denial to accept the disease being suffered by the patients makes them irresponsible in maintaining proper medication provided for treatment as they feel they are fine and the medicine are useless (Chen, 2016; Saxe, 2017). This results in the deteriorated health condition of the patients as their irresponsibility of accepting and managing proper treatment for the disease avoids proper healthcare for resolving the long-term condition such as dementia in this case. The other barrier being faced in Brent in relation to dementia among the patients is lack of information (www.brent.gov.uk, 2015). The lack of information leads the patients to remain unaware they are suffering from negative health condition which in turn delays diagnosis of the disease making the health condition of the patients vulnerable in nature (Deckers et al. 2018). In Brent, due to lack of information regarding signs and symptoms as well as way to manage dementia it is seen that still many people who are living with dementia are not diagnosed or receiving proper care, in turn, deteriorating their mental health condition. Another barrier of healthcare in Brent regarding dementia is presence of stigma regarding dementia (www.brent.gov.uk, 2015). It is seen that South-Asian communities feel dementia being mental illness is regarded as shameful for the family member to be exposed with the disease in the society. This is because the mental disease is stigmatised in the South-Asian culture as crazy where the people suffering from the disease can bring harm to others (Giebel et al. 2015). In Brent, consider number of individuals belongs from South-Asian communities and in these communities, it is seen that proper healthcare cannot be reached to the patients as they avoid accepting treatment or exposing themselves to accept care regarding dementia as it would lower their image in the society. (Refer to Appendix 2)

Impact of Health Policy

The 2010 to 2015 government policy on dementia (Department of Health (DoH), 2015) emphasised on three main action areas: improvements in health and care, improving dementia research and creating dementia friendly communities. This is aligned with the Care Act (2014) which has vital impact on people with multiple LTCs and complex care needs alongside their careers, and the mandate from the government to the NHS for people to be treated as individuals and not focusing on collection of conditions (DoH, 2014). This policy is supported by the ‘No health without mental health’ (ref) strategy document, which envisions to put mental health on the same level with physical health by guaranteeing the access to good-quality services, support, countering stigma and negative attitudes to mental health across the whole of society. The Brent local policy outlined key priorities informed by the JSNA (2015) of the Borough, one of which is concerned with working collaboratively to support the most vulnerable adults including those with dementia.

Health Needs Assessment and Interventions

The functional ability of a person, particularly after the onset of disease, depends on supportive environments and effective management of long term conditions (Margareson and Trenoweth, 2010). Evidence shows that 44% of those with LTC do not feel supported to manage their conditions. Also, poor living conditions which have been associated with social isolation are a factor. According to the 2011 census, of the people living alone in Brent (30,616 households), 8,808 (29%) are 65 years and over (Appendix 4; Adult Social Care survey England, 2017). The decline of cognitive functions in older adults with dementia in Brent over the years is influenced by factors such as socioeconomic status, lifestyle, concomitant chronic disease, medication and social network (Mayeux and Stern, 2012). This suggests holistic approach to needs assessment as evidenced in biopsychosocial model approach (Engel, 1951), as well as opportunities for interventions across the life course to ameliorate the deterioration rate. This approach enables client to be viewed from holistic nursing context and nursing care plan recommendations which are more individualized and inclusive of total aspects of client needs (Health Foundation, 2014).

Whilst medicine (pharmacological intervention) of course has role to play, non-pharmacological interventions that can be complementary or serve as alternative therapies are recommended (Spector et al., 2003; Aguirre et al., 2013). Specifically, Cognitive Stimulation Therapy (CST) is considered for older adults living in Brent with mild to moderate dementia (NICE, 2018). CST (which some allege is expensive) is focused on promoting cognition, independence, and wellbeing tailored to the needs of the individual. A study conducted in Japan reported potential improvement in mood, cognition and some aspects of quality of life in people with dementia (Yamanaka et al., 2013). This makes it cost effective (Knapp et al., 2006). However, the therapy seems to benefit most people with mild to moderate dementia (Spector et al., 2003; Aguirre et al., 2013), which leaves out those at the severe stage of the disease. Those older adults in the progressive stages would require coordinated care and support by trained staff with a clear understanding of each individual’s needs.

The Role of Nurses

The role of nurses for dementia patients begins from pre-diagnosis stage through the end of life stage. The Royal College of Nursing (2007) identified four nursing role functions as supportive, restorative, educative and life-enhancing. Early detection of dementia is advocated as a means of beginning treatment early and planning for progression of the disease. Families and caregivers may consider some of the symptoms as ‘normal ‘ageing process hence, nurses can help raise awareness of the early symptoms and early benefits initiation of treatment. To holistically care and support older adults with dementia is to shift focus from treating just symptoms to focusing on all aspects of the individual—physical, social, spiritual, emotional and psychological wellbeing. The Kaiser Permanente Model(REF) helps to articulate the nurse’s role in promoting holistic care through a proactive approach to managing care by integrating primary and secondary care for people at all stages of the ‘Kaiser pyramid’.

There might be difficulty in achieving patient-centered care ideal for older people with dementia because of the deterioration in mental function associated with the condition. Nolan, Davies, and Brown (2006) suggest that therapeutic relationship should be built, which will allow for natural interaction between all involved in care delivery—caregivers, family, health and social care staff, and the patient. While person-centred care is promoted as the ideal approach to caring for people with dementia, its implementation might pose a challenge to the nurse - considering the fact that people with dementia are affected not only by the disease process, but also by a combination of the following: the stage where neurological function is impaired, other chronic health issues, personal life history, personality traits, and coping style and social environment in which they live (Brooker, 2003; Clissett et al., 2013). However, Skaalvik et al., (2010) argue that despite cognitive impairment, the essence of person-centred approaches is to respect personhood. A strong Nurse-patient relationship and tailored communication skills facilitate accurate assessment and improved outcomes (Jenkins et al., 2016). The nurse should assess the care needs of the person with dementia; understand the signs and symptoms of dementia and the changes to expect with disease progression.

Early in the dementia trajectory, there is need for proactively planning as dementia is a progressive degenerative condition. Nurses are key advocates to support family members to begin the sensitive process of open communication in order to document advance care planning (Clissett et al., 2013). Drawing from the Triangle of Care (Hannan, 2013), nurses are in the best position to identify caregivers and the crucial role they play and develop a therapeutic alliance between the service users, other professionals and caregivers(Johnston et al., 2014; Maharaj, Raffaele, and Wendon2015).

Communication strategy of nurses to provide emotional support

At the end of life care, the nurses require to compassionately and politely communicate with the patients to ensure providing them emotional support apart from focusing on person-centered care. As mentioned by Høgsnes et al. (2016), compassionate and polite communication by the nurses with the patients makes them feel and understand their pain and suffering regarding end-of-life condition. This nature of care is able to provide emotional support to patient suffering from end-of-life condition as they feel the nurses are able to share their pain and they are going to support them in every way to cope with the illness. Moreover, effective communication in end-of-life care helps the nurses to understand key needs and demands of the patients (Knight and Dening, 2018). Thus, they accordingly frame the treatment and care so that the nurses are able to provide proper physical care to reduce pain and suffering of the patient, in turn, promoting patient's emotional health to be able to cope with the disease. (Refer to Appendix 3)

Strategic plan for local access needs in Brent

There are opportunities in Brent to help people with dementia live well within an inclusive supportive community that may reinforce recovery, adaptation and psychosocial growth, and well-being. Building upon existing strategic plans and initiatives which already add considerable value to participant lives is crucial (ref). Key example of this includes peer support programmes, community groups such as raunchy rockers, dementia cafes, and initiatives offered by various faith groups and minority ethnic organisations. The NICE (2015) guidelines and health and social policies such as the Care Act (2014), NHS Mandate (Department of Health and Social Care, 2018), recommend that the individual as a whole and quality of life for people with LTCs, not just the conditions should be the focus of care. This means that for the people with complex needs in Brent, a possible strategy will involve a system that caters for the health needs of this group outside the hospital with the hospitals as the hub for clinical expertise to coordinate with the local system and population. However, it has been considered that this approach might not have a significant effect in the short term. Thus, improving hospital services to assess health and social needs as early as possible and to ensure integrated services where the social staff is trained to detect problems in the community and help manage conditions better, can help provide a more immediate solution (Department of Health and Social Care, 2013).

Conclusion and Recommendations

This essay has critically explored the complex needs of older adults’ group with dementia within the London Borough of Brent and the interplay of wider determinant of health and strategies to overcome these factors. The relevance of integrated provision of patient centred care for older adults with dementia is clearly supported by policy and findings in literature but this can only be achieved by implementing effective strategies to address barriers to health and social care services as part of a coordinated scheme including education and improvement in health and care. Nurses occupy important position in caring for people with dementia; therefore, they must the skills required to be more responsive in caring for this group. As demographics change and health and social needs become more complex, all stakeholders must seek to address all issues raised to improve the health and overall wellbeing of older people with dementia and other LTC in Brent.

References

Chen, C.K., 2016. Defiance, denial, and defining limits: Helping family caregivers of individuals with dementia distinguish the tap-out from the cop-out. Journal of Psychotherapy Integration, 26(4), p.353.

Deckers, K., Köhler, S., van Boxtel, M., Verhey, F., Brayne, C. and Fleming, J., 2018. Lack of associations between modifiable risk factors and dementia in the very old: findings from the Cambridge City over-75s cohort study. Ageing & mental health, 22(10), pp.1272-1278.

Giebel, C.M., Zubair, M., Jolley, D., Bhui, K.S., Purandare, N., Worden, A. and Challis, D., 2015. South Asian older adults with memory impairment: improving assessment and access to dementia care. International Journal of Geriatric Psychiatry, 30(4), pp.345-356.

Høgsnes, L., Danielson, E., Norbergh, K.G. and Melin‐Johansson, C., 2016. Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life–a retrospective records review. Journal of clinical nursing, 25(11-12), pp.1663-1673.

Knight, C. and Dening, K.H., 2018. Good communication with family of people with dementia at end of life: reflections of an Admiral Nurse. British Journal of Neuroscience Nursing, 14(1), pp.6-13.