The Chicago-based Alzheimer’s Association reports that 50 million people worldwide are currently living with dementia. At present, there is no cure: a person with dementia will live with the condition for the rest of their life.
In addition to understanding how to best serve this global population, health professionals must focus on supporting the family members and other caregivers tasked with meeting the complex, long-term care needs associated with dementia.
Alzheimer’s vs. dementia
Late-onset Alzheimer’s, which is the most prevalent type of Alzheimer’s, occurs in people who are aged 65 or older. It develops as a result of multiple factors – risk factors include age, genetics, family history and lifestyle – rather than a single cause.
Alzheimer’s disease is the most common cause of dementia. While dementia generally affects older people – as is certainly the type the public is most familiar with – it is possible for people to develop it earlier.
Diseases such as dementia, vascular dementia and Alzheimer’s affect different parts of the brain, and so they affect people in different ways. As the disease progresses, individuals living with dementia may experience confusion and memory loss – together with all the difficulties this causes for daily living – as well as issues communicating, maintaining personal care, and dealing with changeable, often-erratic feelings and behaviours.
As time goes on, a person living with dementia will require more help carrying out everyday tasks such as getting dressed, eating and washing.
As most people living with dementia are cared for within the community, the majority of these care demands are met by family or other informal caregivers. In the absence of this type of care, people with dementia would experience poorer quality of life and would require institutional care – of the type offered by respite and nursing homes – earlier.
Proactive management of dementia
Research indicates that taking appropriate, practical and proactive action to manage Alzheimer’s and dementia improves the quality of life of both affected individuals and their families.
What does proactive management look like?
- Creating an effective care plan to manage coexisting conditions and detailing the appropriate use of available treatment options.
- Establishing care coordination between physicians, healthcare professionals and providers, and caregivers.
- Participating in activities that are meaningful to the individual and which bring purpose to their life.
- Maintaining a sense of self-identity and relationships with others.
- Providing opportunities to connect with others living with dementia via support groups, day centres and other services.
- Becoming educated about the disease.
- Planning for the future.
- Providing family caregivers with effective training in managing the day-to-day life of the care recipient. A holistic approach to dementia care is critical – and this last point about the importance of supporting family and friends cannot be overstated.
However, supporting family caregivers goes far beyond the provision of effective training. What issues are associated with families of dementia sufferers? What else can health providers do to support this demographic? Issues facing families and carers of individuals with dementia?
A dementia diagnosis has the potential to change far more lives than that of the newly diagnosed individual. When an individual is diagnosed with Alzheimer’s or dementia, it can have a significant and overwhelming impact on their family and friends.
The physical, emotional and psychological burden felt by families is often characterised by stress, worry, sadness, burnout, conflict, confusion and resentment. Many caregivers are likely to be balancing existing responsibilities alongside caring – for example, raising children, pursuing careers, and maintaining relationships.
Changing roles and financial strains only increase the feeling of overwhelm, and those who seek to provide care in their own home for a loved one living with dementia may find there is little respite – both in terms of physical and mental capacity – from caring responsibilities. It can leave carers feeling socially isolated, and causes many to sacrifice their own well-being in order to ensure their family member receives the best care possible. As well as anxiety and depression, demands on caregivers can lead to a number of other health conditions.
It is also worth noting that while the more negative aspects of dementia care tend to be discussed, caregivers also report positive feelings and outcomes associated with looking after loved ones.
What can be done to support family, friends and other caregivers?
Those caring for people with dementia should ensure they are registered as carers with their local GP and, where possible, apply for a carer’s assessment and see if they are eligible for any benefits for carers.
One of the most important aspects is adequate, professional training to ensure that caregivers are prepared for the task of caring for someone with dementia. As well as training and advice from healthcare professionals and related services, caregivers can be signposted to online courses and information to support them in their roles.
As a person transitions through the various stages of dementia, their needs will change; families and carers need to be educated as to what each stage is likely to mean for their loved one, together with the specific care expectations associated with the progression of the disease. For example, while early-stage care can be feasible within the private home of a patient or carer, later-stage dementia may require investigation of options such as respite care or additional support from social services.
Health professionals can identify any caregivers who may be particularly susceptible to adverse effects of caring, helping to remove or lessen any factors seen to exacerbate strain. Dementia Connect, a support service offered by the Alzheimer’s Society, provides telephone, online and face-to-face support for carers of people with dementia. Free and easy-to-access, it aims to connect the public with appropriate support services to make life-supporting dementia easier.
As well as emotional and mental health support – such as signposting to counselling, local support groups and online forums, and promoting self-care strategies – helps facilitate access to other practical tools and support options.
Evidence demonstrates that such psychosocial interventions have worked to reduce the caring burden and prevalence of depression, alongside delaying care home admission of dementia patients.
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Develop the skills to build a strong community network – and support people to support their loved ones living with dementia – with the University of the Commonwealth Caribbean’s (UCC) online MBA Healthcare Management programme.
The essential skills offered by the MBA in Healthcare Management programme at UCC will equip you to excel in a rewarding sector and progress into senior healthcare leadership roles.
As well as specialist modules in the management and transformation of healthcare services, you will study business-focused topics designed to help you run large organisations. Your studies will explore healthcare innovation, quality management, marketing, operations, finance, people management, and more.
—This article was contributed by the UCC.