A satisfying existence
Inclusive living for people in need of care has a number of distinctive characteristics comprising: (1) living contentedly in the home or residence of their personal choice; (2) being able to easily access helpful facilities – health, social and third sector services, leisure and recreational activities, etc. – within their locality; (3) along with their carers, to be in a position to effectively evaluate how well circumstances are meeting all aspects of wellbeing and, if necessary, to be an “active voice” and a catalyst for change if conditions are unsuitable or rights have been violated.
In short, inclusiveness embraces a state of belonging, acceptance, and fulfilment within your home and surroundings. It is based on principles of human rights, equity, and empowerment. Naturally, there is a variety of interpretations, some seemingly contradictory, of what the specific features of inclusive living entails. This is only to be expected given the wide-ranging spectrum of disabilities and hardships to be considered and addressed. Throughout this article the focus has been on those living with dementia but in practice the proposed ideas and solutions have a far wider reach.
Stigmatization and marginalization
Stigmatization is linked with marginalization, and combined, they generate an assortment of social concerns. The former may refer to having a mark of shame or disgrace which is associated with a particular quality or attribute; the latter to being ostracized or regarded as an interloper or outsider. In modern societies, there exist insensitive, exclusive practices imposed on vulnerable groups such as those experiencing physical disabilities, epilepsy, menopausal difficulties, and mental health issues. These groups often share some of the same challenging experiences in their everyday lives – loneliness, defenselessness, neglect, unemployment, homelessness, and a sense of uselessness. Some encounter a multiple of disadvantages. To make matters worse, they may be cut off from support services and benefits to which they are entitled. Experiencing inequality or living in impoverished circumstances gnaws away not only at neighbourhoods’ social fabric but also increases the risk of inhabitants feeling wounded, irritated, alienated, and powerless.
Occasionally, previous acquaintances are unwilling or even afraid to talk to those with dementia or to accompany them to family or other social occasions. The use of both spoken or written language can result in ruling persons out from expressing their views and wishes. Sometimes, professionals ignore or fail to listen to lived experiences. Even in the presence of caregivers, they may ‘talk over’ those directly in need of guidance and discuss their conclusions with others. Failure to listen appropriately during decision-making occasions – whether during casual, face-to-face conversations, or formal meetings – can result in unwelcome or superfluous means of support. There is a need to change misguided attitudes and enhance forms of communication – listening, signing, talking, writing and so forth – to ensure that wishes and opinions are clearly understood by all parties.
Policymakers must give frank deliberation to the ‘active voices’ of all those requiring support and their families. Additionally, they should seek out what might be referred to as the ‘quiet voices’ of those who are not aware of their rights and benefits and make certain that they are treated with impartiality and justice. All means all; inclusivity signifies and augments the adding of value to people’s everyday lives.
“Being treated negatively by others and discriminated against, in other words experiencing stigma, is a common experience for many families of people living with dementia and has been identified as a global priority.” (Jen Bhatt, 2023)
Other obstacles to be surmounted
Differing progressive neurological diseases, along with other disabilities, can have an array of common barriers to overcome. For example, regarding dementia, these may include: long waits before a diagnosis; insufficient attention to follow-up and the monitoring of debilitating conditions; access to buildings and public transport; a lack of opportunities to engage in pastimes and community facilities; and anxiety and stress from the high cost of social care. The use of bespoke digital technology, as with personal alarms and social media, can be extremely helpful with appropriate training. However, many including older persons may not have sufficient funds to purchase the latest gadgets or not be skilled in the application of new developments. These circumstances give rise to problems, especially when individuals are expected to make use of technology for banking, managing home deliveries, paying bills, finding essential information, contacting family and carers, and interconnecting with agencies and professionals.
Without a clear picture of how effective current government programs are operating, it is extremely difficult to know if relevant improvements are being made in promoting a more caring society. Constructive policies to eliminate cycles of poverty can go far in reducing emotional remoteness while enhancing psychological well-being and mental health. It is incumbent that policy-makers require to accurately measure the impediments and obstacles to which those experiencing a wide range of ailments are subjected. A comprehensive method, accessible for public scrutiny, to systematically collect and analyze information and data is obligatory for monitoring progress and evaluating outcomes.
“To advance dementia care, we need to take a global view and learn from research and clinical practice across the globe.” (Clarissa Giebel, 2020)
The truth is that people are able, not only to survive but live well, with dementia or adverse conditions, particularly when they feel respected, valued, loved, and are provided with sufficient backing and encouragement. At times, well-judged interventions targeted on one impediment can also result in improvements in other aspects and be the beginning of a trajectory towards healing, security, and self-respect.
Pathways towards inclusiveness
Improvements to and the maintenance of the quality of local environments have a significant part to play in enriching daily joyful and fulfilling lifestyles. Welcoming and pleasant vicinities ensure: (1) wide-ranging opportunities to foster general health and wellbeing; (2) involvement in leisure groups – social outings, singing, choirs, dancing, and personalised programs to extend social competences; (3) engagement in sporting and recreational activities, as walking, bowls, and gardening to enhance fitness and friendships for all ages; (4) therapy groups to build confidence and self-esteem; and, (5) for some, support in their workplaces. Inclusiveness and autonomy can be enhanced when carers ascertain potentially useful tips and advice on topics such as making supportive changes in the home, improving safety and security, and engaging with service providers (The Scottish Dementia Working Group, 2024). Moreover, as indicated already, training in the use of well-chosen technology and social media has ushered in many ways in which care services can be delivered and people can extend their independence, self-care, and involvement in local clubs and associations.
The distinguishing features of current living residences can be examined in terms of differing aspects – location, resources, ethos, professional collaboration, safety, welfare – across a very broad spectrum. They might include: hospitals – generally not fitting for prolonged stays and can result in bed-blocking due to poor planning and inadequacies in care within authorities; care homes – these vary greatly as regards quality and fitness, can be very expensive, and may cause unwarranted separation from loved ones; specialist centres with integrated health, social and therapeutic facilities; the village model with clusters of interspersed premises enabling care staff to offer collective services; ‘live-in’ arrangements within their own home for elderly couples and supported through aid and supervision by visiting care workers; a part of or an extension to the family home as living quarters for infirm parents and sometimes lovingly referred to as ‘granny flats’; in urban areas, ‘life in the high street’ apartments on ground premises or sheltered housing which affords easy access to shops and recreational facilities with their caregivers, perhaps other members of the family able to visit them on a regular basis. There are other examples, on a continuum from excellent to unsatisfactory with reference to benchmarks, to be found across authorities and nations. (See Footnotes below relating to Alzheimer Scotland, 2024.) Meticulous investigation is necessary before an evaluation on appropriateness is reached. I suspect that the most desired one for many may basically be some kind of arrangement for living happily in their own suitably-adapted home, near family members, while also receiving or purchasing a high standard of external assistance as and when required. Moreover, for an elderly couple, rather than paying for two places in a residential care home, it could be much more cost-effective and fulfilling.
When premises are being refashioned, it is vital that specific preconditions are carefully assessed and that the opinions of those requiring support and their carers are taken into account. Consideration of both interior and external architecture is important when new buildings are being constructed or older ones are being adapted to expedite the everyday activities which residents require: distinct aspects of safety; digital access and support; provision for wheelchairs; hand rails on entrances; and walk-in showers; to mention a few. Attention to detail will bring to fruition the twofold aim of facilitating independent living within households and, at the same time, ensuring that access to participation in preferred events is available.
As regards undertaking alterations, some serious exploration may be apposite as it is often wise to “…remember, designing or adapting your home isn’t a single event – it’s a process, and you’ll learn over time what does, and doesn’t work for you.” (See Footnotes on DesHCA Designing Home for Healthy Cognitive Ageing, consulted 2024).
Concluding remarks
All citizens have the right to live freely and contentedly. This is a straight-forward remark to make but, in practice, it is a complex and worldwide challenge which demands considerable planning and human ingenuity to achieve advancement. Stigmatization and marginalization of the disabled and less fortunate must be opposed. It is totally unacceptable that vulnerable and innocent persons can be treated as scapegoats and objects of ridicule. There is a moral imperative to work towards equity and optimal lifestyles for everyone. However, it would be foolish to expect that a ‘one size fits all’ solution will be discovered. Rather, well-managed approaches which identify and address both obstacles and prerequisites will underline the most advantageous pathways towards genuine inclusive living. Effective, person-centred strategies will take due account of the wishes and suggestions of those in need of specialised inputs and their caregivers.
“We know that social isolation and loneliness is bad for our health, both mental and physical. It is essential that we recognise who in society is most affected and focus our efforts to tackle these inequalities.” (The Scottish Government, 2023)
Footnotes
An interesting way of grouping alternative models of long-term care can be found in Appendix 2 of the Commission on the Future of Long Term Care in Scotland report (Alzheimer Scotland, 2024). These are: (1) specialist housing (2) small-scale living (3) collaborative housing (4) shared lives (5) care villages (6) care complexes/campuses (7) day services (8) home care (9) future-proofing/inclusive living.
For details on implementing interior and outdoor alterations, you may wish to consider ideas on the website http://www.deshca.co.uk in particular: Designing for Lifetime – Tips and Tricks for Creating a Home That Supports You. (DesHCA Designing Homes for Healthy Cognitive Ageing)
A related blog on the potential benefits of community support in action is at: https://improvingcareand.education/23/02/07/community-support-in-action/
References
1. Clarissa Giebel (2020) Current dementia care: what are the difficulties and how can we advance care globally? BMC Health Services Research (Published online: May 2020)
2. Jen Bhutt (2023) Carers of people living with dementia experience discrimination. UCL News 6 January 2023.
3. The Scottish Government (2023) Social isolation and loneliness: Recovering our Connections 2023 to 2026.
4. Alzheimer Scotland (2024) Commission on the Future of Long Term Care in Scotland report
5. DesHCA Designing Homes for Healthy Cognitive Ageing (consulted 2024) Designing for Lifetime – Tips and Tricks for Creating a Home That Supports You
6. The Scottish Dementia Working Group (2024) Our “Top Tips” for living well with dementia
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