Frank O’Hagan
Why dementia deserves constant public responsiveness
Caregiving can be a difficult and long haul and, without doubt, carers of those persons living with dementia play an invaluable role in modern society. In practice, dementia is a complex disability which in the public mind is generally associated with cognitive impairments. However, on occasions, there may well be too much emphasis placed on intellectual abilities or medical involvement at the expense of the many other facets which also require examination. A more integrated and compassionate stance which embraces the everyday needs, care and support of the whole person is called for.
Reasons to be hopeful?
There has been a commonly held view that, following a formal diagnosis of dementia, life is inevitably on a rapidly downward slope. This pessimistic outlook has tended to consign dementia firmly within the framework of a deficit model; it has focused on the person being regarded predominantly as a patient. Recent advances and constructive forms of collaboration have highlighted grounds for espousing much more positive attitudes. They emphasize the value of concentrating on factors aimed at ‘living well’ with dementia.
Adopting a person-centred bio-psycho-social approach
In responding to concerns relating to dementia, a planned strategy should be clearly based on an individual’s assessed needs. The term ‘person-centred bio-psycho-social approach’ aims to underline the benefits of giving due consideration to a multiplicity of personal, biological, psychological and social factors which may be of significance. These categories are briefly described below and, of course, overlap to some extent. At all stages of planning and implementation, attentiveness must be paid to matters of confidentiality and rights of access to information.
Personal factors
Personal characteristics impact on mood, emotional resilience and interactive relationships. They are central to decision-making about effective self-control, esteem, happiness and contentment. Purposeful assistance within this area could involve: washing, showering, toileting and dental hygiene; looking after clothing; dressing in the morning and at bedtime; arranging and preparing meals; organising opportunities for pursuing hobbies and for acquiring up-to-date technological skills; checking that medication is taken at designated times of the day; and so forth.
Biological factors
In medical terms, dementia can be described as a neurodegenerative disease and, as such, its prevention or deceleration entails the maintenance of good ‘brain health’. Biological research with reference to the early onset and development of the differing forms of dementia has opened up possibilities for beneficial interventions within the overall ageing process. In particular, the focus on the ‘plasticity’ of the brain provides an aspiring prospect for future progress. Pertinent features which might be taken into account when planning provision include: nutrition and wholesome diets; good sleeping habits; the promotion of healthy activities such as participation in recreational pastimes and physical exercise; the avoidance of excess alcohol consumption and giving up smoking; taking action on mental health issues; and the monitoring of detrimental setbacks relating to cardiovascular and respiratory illnesses.
Psychological factors
It is well documented that dementia, in its countless manifestations, can result in humiliation and embarrassment, mistrust and insecurity, loneliness and isolation, panic and confusion. When such difficulties occur, suitable steps ought to be taken to replace them with trust, confidence and self-assurance. Warm and loving friendships do much to establish and reinforce self-worth, composure and a sense of belonging. Additionally, there can be potential benefits, often worthy of being recommended, from a wide range of formal or informal psychological therapies linked with music, arts and crafts, mindfulness, relaxation and the learning of life skills.
Social factors
It is generally acknowledged that a variety of ailments frequently related with dementia do not ‘reside’ solely within the brain and can be ameliorated through planned improvements in collective activities. Group memberships, leisure programmes and convivial company can all play a direct role in the enhancement of social wellbeing. On a broader front, when outlining arrangements for a care agenda, greater attention requires to be given to noteworthy communal problems such as inadequate housing, poverty and the lack of professional services. Examples of dementia being associated with distress provide further cogency to the value of enriching social contexts, for instance, when advocating proposals to ensure greater self-efficiency and connectedness.
“Caregiving is a constant learning experience.” (Vivian Frazier)
Empowerment for all caregivers!
There is the constant danger that the capacity to take appropriate action is confined to those who know the procedures and regulations regarding benefits and help. What could be termed as ‘blocking systems’, ‘institutionalised inertia’ and ‘professional silos’ need to be identified and exposed, with resources made clear. Relevant, high-quality guidance and support should made available to everyone who has taken on responsibilities to look after vulnerable people. A significant shift of much greater power to persons experiencing dementia and their carers is of paramount importance.
Concluding comments
Without doubt, perspectives on dementia within modern society necessitate a wide and nuanced approach towards diagnosis, personal backing, prescribed medication, psychological aid and social facilities. Although public information and understanding concerning dementia have been increasing, more educational programmes in schools, the raising of awareness through the media, and well-judged petitions to authorities and politicians remain necessary.
Footnote: This page is closely linked with another entitled ‘Better Planning’ https://improvingcareand.education/home/better-planning/ and an article with the heading of ‘Evaluating the Quality of Carer Support Plans and Statements’ https://improvingcareand.education/2021/03/24/high-quality-planning/
Together, they make the case for a higher quality of planning to sustain and serve those who require assistance and their carers.
Improving Care and Education 