IntroductionTheworld’s population is ageing and with that diseases such as dementia are on therise.
Improvements in healthcare have seen people living longer healthier livesthan our predecessors but with the negative outcomes of neurodegenerativediseases. It is known to affect older people even though it’s not the naturaloutcome of ageing. Dementia is asyndrome, that of a chronic and progressive nature. It is caused by a varietyof brain illnesses that affect memory, behavior, thought process and inabilityto perform normal routine functions. The number of people living with dementiaglobally in 2015 was estimated at 47millionand expected to reaching heights of >74million in 2030 and >130 millionby 2050. There is lack of awareness ofthe disease and along with it comes social stigma, barriers to diagnosis andcare, and impacts caregivers and families physically, psychologically and economically(1).Public Health and Epidemiology Identifying riskfactors of dementia is still in its infancy. These include countering factorsfor vascular disease, including diabetes, midlife hypertension, obesity, smoking,and physical inactivity.
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In high income countries, prevalence is 5–10% in thoseaged 65+ years, usually greater among women than men, mostly because women livelonger. In the US, higher prevalence is seen in African American andLatino/Hispanic populations than in White non-Hispanic populations. Increasingage is identified as the strongest and only risk factor for dementia (1).Figure 1 and 2 illustrate the estimated numbers of people living with dementiaand estimated incidence rates, respectively. Reducing dementiarates in all racial/ethnical groups can have a major positive public healthimpact. It has been predicted that in every racial/ethnic group, 1 in 4individuals who survive to the age of 65 will be diagnosed with dementia(2).
Reductionof dementia rates should therefore be tackled by early diagnosis and solvinghealth inequalities that affect the disease. Health InequalitiesStudies haveshown major inequalities socioeconomically, psychosocially due todiscrimination, behavioural norms, comorbidities and genetic profiles. Studieshave shown dementia incidence rates are slightly higher among women than men atage 90+ in some race/ethnic groups. Although, this disparity may be dueselective survival of women living longer than men. Studies have also foundinequalities due to literacy, which is a marker for quality of education andmeasure for socioeconomic status, play a role in disease onset. Highereducational levels have been associated with low prevalence of dementia.
Thismay be due environmental factors like adequate nutrition and access to healthcare.Other inequalities include social stigma and discrimination. A lack ofawareness and social cohesion in communities is observed. Stereotyping producesnegative emotions conveying contempt, aversion and distress which imposefeelings of rejection and disempowerment on those experiencing these reactions.Adversely, this leads to ‘spoiling’ of self-identity. Therefore, suchdiscriminations must be addressed and made aware of, to communities, andsupport given to those experiencing it(2)(3). Role of individuals and their communities The worldwide increase of persons living with dementia alsoimpacts the costs of their care and the importance of caregiving. As thecondition deteriorates patients, their families and health professionals must combinetheir efforts to manage symptoms, determine the outcomes and handleillness-associated disabilities.
Different communities handle caregiving basedon different cultural, traditional values, responsibility, religious andspiritual beliefs. Care givers who are content in their role experience lessburden, better health and relationships, and feel socially supported. Moreover,care-givers have reported that social support was most essential in deliveringproper care. Role implementation of care-giving, viewed by the interactionapproach, depends on the care-giver, receiver and mutuality between the two andthe activities of care-giving differ depending on the disease stage.
Moreover,consultation and support programs must be offered as their acceptance andpreparation for the role is vital. Other factors like gender, age, education,and ethnicity also influence the way caregivers view their role. Caregiversplay critical roles in the life of people living with dementia and are oftenreferred to as the “invisible second patients”. The effect of being a familycaregiver is one that has mixed outcomes.
Here, there is a higher burden ofpsychological effects and social isolation in addition of both physical illhealth and financial hardship. They face greatest challenges in managingconditions and dealing with impact of symptoms of dementia as they are tough,time consuming decisions, especially during the exploration of options afterthe first diagnosis. Furthermore, their acceptance of the progressive diseaseis also important to decrease the patient’s anxiety and resistance to care.
Supportfor care-givers through psychoeducation and community agencies like Alzheimer’s Society,can have a significant effect on carer’s burdens and mental health. Without caregivers,patients with dementia have apoorer quality of life and would need institutional care faster. Enablingpeople with dementia and their primary carers to live well with the conditionis seen as a top priority for the development of health and social policies inthe UK government. Positive management of the person with dementia requires acomplete plan that includes a partnership between doctors, health care workers,and families(4)(5)(6). Healthcare Organisations and Health Policy The UK government prioritises the enabling of peopleto live well with dementia. Living well can be considered as a ‘self-perceivedlevel of comfort, function and contentment with life’. This aim of ‘living well’drives health and social policy. Since the 1900s, care for chronic illness hasmoved from institutional to community care in policy initiatives, culminatingin the National Health Service and Community Care Act 1990.
Other initiativeswithin the modernization agenda are programmes like the Expert PatientsProgrammes which aim to build local support networks and therefore enhancepatient self-care. Additionally, NHS Scotland and NHS England also aim toimprove the rate of diagnosis. Studies have indicated that cultural factors andconcerns over suitable services lead to delay in seeking help. This delay isfurther impacted by the lack of understanding and awareness about the disease.However, healthcare organisations aim to provide the adequate informationfamilies need and further improve diagnosis of dementia.
The recent launch of the former Prime Minister’s “Challenge onDementia: Delivering major improvements in dementia care and research by 2015”,outlines the government’s commitment “to go further and faster on dementia, bymaking life better for people with dementia and their carer’s, and supportingthe research that will ultimately help us slow, stop and even prevent thecondition”. The document calls for strengthening the organization of localchampion groups, and setting up mechanisms for regular reports to the PrimeMinister through relevant ministers in the Department of Health. The PrimeMinister’s personal involvement has generated media interest which is likely tohave helped increase awareness. In Scotland, the Alzheimer Scotland ‘5 Pillars of Post-DiagnosticSupport’ model highlights this by providing services that support individualsand families living with dementia and help them in managing symptoms, futureplanning and decision making and also providing community and peer support.Furthermore, the UK government strive to help with other issues that impactindividuals as well as their carers by introducing various services and policies.
These include support for carers, carer’s health, funding, dementia friendlytransport and management of patients with difficult behaviour, just to name afew(7)(3)(8)(9). Dementia isone of the toughest challenges in healthcare and presents a looming threat tofinancial and social systems across the developed and developing world. Governmentscan introduce and enforce a stepwise process such as · Early Education, Awareness, diagnosis and treatmentplans · ImproveInstitutional and Residential care· Integrate thecare pathways and coordination of patient care· Improvetraining for the Health care professionals who handle patients · MonitorProgress · Commitment to Research· Recognize the role of new innovative technologies tohelp rehabilitate and enable patients and carers to live life to the fullest.Conclusion Dementia shouldbe considered with the context of a country’s overall public health agenda and shouldbe recognized as a public health priority. Focus should be prioritized not tothe middle and latter stages of the dementia disease progression journey but alsointroduce a more holistic approach to early diagnoses and public approach fornew cases identification. Tackling risk factors and promoting behavioralchanges to prevent the lifetime risk of dementia does require investment fromgovernment and they should personally support and beinvolved in the development and implementation of National Dementia Plans. National Dementia Plans are the single most powerfultool to improve dementia care and support in any country by providing a long-term approach. This is required to make dementia care andsupport, in its broadest sense, a success.