Introduction living with dementia globally in 2015

Introduction

The
world’s population is ageing and with that diseases such as dementia are on the
rise. Improvements in healthcare have seen people living longer healthier lives
than our predecessors but with the negative outcomes of neurodegenerative
diseases. It is known to affect older people even though it’s not the natural
outcome of ageing.  Dementia is a
syndrome, that of a chronic and progressive nature. It is caused by a variety
of brain illnesses that affect memory, behavior, thought process and inability
to perform normal routine functions. The number of people living with dementia
globally in 2015 was estimated at 47million
and expected to reaching heights of >74
million in 2030 and >130 million
by 2050.  There is lack of awareness of
the disease and along with it comes social stigma, barriers to diagnosis and
care, and impacts caregivers and families physically, psychologically and economically(1).

Public Health and Epidemiology

 

Identifying risk
factors of dementia is still in its infancy. These include countering factors
for vascular disease, including diabetes, midlife hypertension, obesity, smoking,
and physical inactivity. In high income countries, prevalence is 5–10% in those
aged 65+ years, usually greater among women than men, mostly because women live
longer. In the US, higher prevalence is seen in African American and
Latino/Hispanic populations than in White non-Hispanic populations. Increasing
age is identified as the strongest and only risk factor for dementia (1).
Figure 1 and 2 illustrate the estimated numbers of people living with dementia
and estimated incidence rates, respectively.

Reducing dementia
rates in all racial/ethnical groups can have a major positive public health
impact. It has been predicted that in every racial/ethnic group, 1 in 4
individuals who survive to the age of 65 will be diagnosed with dementia(2).Reduction
of dementia rates should therefore be tackled by early diagnosis and solving
health inequalities that affect the disease.

 

Health Inequalities

Studies have
shown major inequalities socioeconomically, psychosocially due to
discrimination, behavioural norms, comorbidities and genetic profiles. Studies
have shown dementia incidence rates are slightly higher among women than men at
age 90+ in some race/ethnic groups. Although, this disparity may be due
selective survival of women living longer than men. Studies have also found
inequalities due to literacy, which is a marker for quality of education and
measure for socioeconomic status, play a role in disease onset. Higher
educational levels have been associated with low prevalence of dementia. This
may be due environmental factors like adequate nutrition and access to healthcare.
Other inequalities include social stigma and discrimination. A lack of
awareness and social cohesion in communities is observed. Stereotyping produces
negative emotions conveying contempt, aversion and distress which impose
feelings of rejection and disempowerment on those experiencing these reactions.
Adversely, this leads to ‘spoiling’ of self-identity. Therefore, such
discriminations must be addressed and made aware of, to communities, and
support given to those experiencing it(2)(3).

 

 

Role of individuals and their communities

 

The worldwide increase of persons living with dementia also
impacts the costs of their care and the importance of caregiving. As the
condition deteriorates patients, their families and health professionals must combine
their efforts to manage symptoms, determine the outcomes and handle
illness-associated disabilities. Different communities handle caregiving based
on different cultural, traditional values, responsibility, religious and
spiritual beliefs. Care givers who are content in their role experience less
burden, better health and relationships, and feel socially supported. Moreover,
care-givers have reported that social support was most essential in delivering
proper care. Role implementation of care-giving, viewed by the interaction
approach, depends on the care-giver, receiver and mutuality between the two and
the activities of care-giving differ depending on the disease stage. Moreover,
consultation and support programs must be offered as their acceptance and
preparation for the role is vital. Other factors like gender, age, education,
and ethnicity also influence the way caregivers view their role. Caregivers
play critical roles in the life of people living with dementia and are often
referred to as the “invisible second patients”. The effect of being a family
caregiver is one that has mixed outcomes. Here, there is a higher burden of
psychological effects and social isolation in addition of both physical ill
health and financial hardship. They face greatest challenges in managing
conditions and dealing with impact of symptoms of dementia as they are tough,
time consuming decisions, especially during the exploration of options after
the first diagnosis. Furthermore, their acceptance of the progressive disease
is also important to decrease the patient’s anxiety and resistance to care. Support
for 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 a
poorer quality of life and would need institutional care faster. Enabling
people with dementia and their primary carers to live well with the condition
is seen as a top priority for the development of health and social policies in
the UK government. Positive management of the person with dementia requires a
complete 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 people
to live well with dementia. Living well can be considered as a ‘self-perceived
level of comfort, function and contentment with life’. This aim of ‘living well’
drives health and social policy. Since the 1900s, care for chronic illness has
moved from institutional to community care in policy initiatives, culminating
in the National Health Service and Community Care Act 1990. Other initiatives
within the modernization agenda are programmes like the Expert Patients
Programmes which aim to build local support networks and therefore enhance
patient self-care. Additionally, NHS Scotland and NHS England also aim to
improve the rate of diagnosis. Studies have indicated that cultural factors and
concerns over suitable services lead to delay in seeking help. This delay is
further impacted by the lack of understanding and awareness about the disease.
However, healthcare organisations aim to provide the adequate information
families need and further improve diagnosis of dementia. The recent launch of the former Prime Minister’s “Challenge on
Dementia: Delivering major improvements in dementia care and research by 2015”,
outlines the government’s commitment “to go further and faster on dementia, by
making life better for people with dementia and their carer’s, and supporting
the research that will ultimately help us slow, stop and even prevent the
condition”. The document calls for strengthening the organization of local
champion groups, and setting up mechanisms for regular reports to the Prime
Minister through relevant ministers in the Department of Health. The Prime
Minister’s personal involvement has generated media interest which is likely to
have helped increase awareness. In Scotland, the Alzheimer Scotland ‘5 Pillars of Post-Diagnostic
Support’ model highlights this by providing services that support individuals
and families living with dementia and help them in managing symptoms, future
planning and decision making and also providing community and peer support.
Furthermore, the UK government strive to help with other issues that impact
individuals as well as their carers by introducing various services and policies.
These include support for carers, carer’s health, funding, dementia friendly
transport and management of patients with difficult behaviour, just to name a
few(7)(3)(8)(9).

 

Dementia is
one of the toughest challenges in healthcare and presents a looming threat to
financial and social systems across the developed and developing world. Governments
can introduce and enforce a stepwise process such asEarly Education, Awareness, diagnosis and treatment
plans Improve
Institutional and Residential care Integrate the
care pathways and coordination of patient care Improve
training for the Health care professionals who handle patientsMonitor
ProgressCommitment to ResearchRecognize the role of new innovative technologies to
help rehabilitate and enable patients and carers to live life to the fullest.

Conclusion

Dementia should
be considered with the context of a country’s overall public health agenda and should
be recognized as a public health priority. Focus should be prioritized not to
the middle and latter stages of the dementia disease progression journey but also
introduce a more holistic approach to early diagnoses and public approach for
new cases identification. Tackling risk factors and promoting behavioral
changes to prevent the lifetime risk of dementia does require investment from
government and they should personally support and be
involved in the development and implementation of National Dementia Plans. National Dementia Plans are the single most powerful
tool to improve dementia care and support in any country by providing a long-term approach. This is required to make dementia care and
support, in its broadest sense, a success.