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Caregiving Collaborative planning Health and wellbeing Manifesto

How can Support for Caregivers be Improved?

Frank O’Hagan

… because carers need cared for.

Caregivers in today’s society

It is generally recognised that many carers who have had no formal training deliver a great deal of unpaid support and save vast sums of money for hard-pressed local authorities and the National Health Service. Many adults have to retire early to look after loved ones. Some of them have personal, financial or employment anxieties which are exacerbated by the time and efforts required to acquire high-quality guidance and help. Other carers are in their teenage years and suffer significantly due to home circumstances. They often miss out on aspects of the educational and leisure pursuits which their peers experience.

In everyday matters, carers provide a very wide range of provision for the most vulnerable by encouraging social activities, monitoring nutrition and physical exercise, cooperating with professional home services, preventing unnecessary hospitalisation, and assisting with planning for the future. Within their localities and in the wider society, they campaign openly for the establishment of disability-friendly and disability-empowering communities. Additionally, they promote public awareness, for example, by contributing to school projects on understanding the nature of dementia and on how to address related concerns.

But, just as modern society with its ageing population needs caregivers, urgent reciprocated backing is essential. Considerably greater resources ought to be allocated to enhance the health, wellbeing and applied skills of carers. If appropriate forms of support are lacking, then not only the quality of their lives but also the routines of those in receipt of community care will suffer. In turn, such outcomes are likely to lead to even more bed-blocking in hospitals and greater demands on residential placements.

Addressing caregivers’ requirements

A clear distinction has to be made between those who undertake caring  tasks through personal dedication or a sense of civic duty and those who might be termed ‘professional carers’ and are paid for their work. Both of these large groups can be sub-divided further. For instance, there are caregivers who live continuously in the same premises as those with disabilities; helpers who drop in habitually on a voluntary basis to check on the wellbeing of neighbours in need; and care personnel who have accountability for monitoring the value of support being provided in residences or sheltered accommodation. These distinct examples by no means give the complete picture of the wide range of current caring roles. They are mentioned simply to highlight the necessity of individualised and tailored assistance when planning to develop suitable abilities and skills in a meaningful and all-encompassing fashion.

Caregivers have their own personal prerequisites, specific to the particular situations in which they find themselves. On occasions, there is the danger that advice from specialists is inclined to be directed towards them as if they were a homogenous entity although in undertaking their daily duties they have many disparate responsibilities and constraints. Even when pertinent support and training sessions are available, it is commonly the case that they are unable to attend as there is no cover available to free them from their designated tasks. Of course, at times, it is possible and correct for both the carer and the recipient of care to attend together but frequently this is neither practical nor fitting. Agencies often ignore taking obstacles to meaningful participation into consideration when organising training, tutorial or therapeutic events.

Government, health and social services and support agencies have significant responsibilities in monitoring and responding to the necessities of carers of all ages. These can include: relevant and timely information (and the avoidance of misinformation); welfare and social amenities; availability of financial benefits; and respite care. Attention must be given to guaranteeing that the ‘power’ of professionals over carers is not abused. Specialists will wish to ensure that their roles are not perceived as taking control of matters but rather as facilitating both collaboration and empowerment in order to accentuate positive outcomes.

Listening, evaluating and progressing together

On occasions, policy with regard to caring can appear as if it was a value-free enterprise influenced merely by financial factors rather than by quality-of-life deliberations. Paying close attention to the voices of all stakeholders about their hopes, beliefs, targets and aspirations can be so easily neglected. Those being cared for, their carers, spouses, neighbours and friends can aid in transmitting valuable information and concerns to busy professionals. Everyone needs to fully recognise the strength of involving appropriate interested parties as an essential feature of good practice. Of course, in all aspects of work, due attention must be given to matters of confidentiality and the right of access to information. Effective preparation and teamwork enable clear, well-judged strategies to be formulated, shared and implemented.

When it comes to gauging the characteristics of care settings – whether the location is at home or in a residential placement – the answers to a variety of key questions should be carefully noted and examined. Are the dignity and rights of those being cared for fully acknowledged across age, gender, ethnicity, faith and disability? How significant, germane and measurable are the criteria used for appraising the worth of support being made available? How effectively do professional staff self-evaluate the execution of their duties? Are relatives and caregivers asked for their views prior to reports being written and circulated?

Of course, in certain circumstances, potentially controversial queries may be justifiably raised. For instance, why are the persons in receipt of care, or carers, not always being offered opportunities to give their own assessments of reports or submit objections – as a basis for further discussion and reflection – prior to final submissions by providers? If apt, it is important to acknowledge the chasm which can exist between ‘institutionalised care’ settings and integrated community support services.

Regardless of familial, communal or residential situations, it can be strongly argued that relatives and carers should be given key roles in commenting on the overall benefits of what is available. In truth, they may feel a responsibility to identify potential weaknesses or elements of inadequate procedures within prevailing settings. In doing so, they will be seeking to ensure that their loved ones are not being subjected to adverse conditions. Their objectives should underline the merits and potency of enhancing environmental factors and of promoting high standards in personal and social wellbeing. Joint aims and a sense of togetherness can go far in establishing irrefutable progress.

In summary, caregivers are generally closer to those for whom they are responsible than professionals who may only visit for short sessions or on an irregular basis. Additionally, those who require care and support have to be shown respect and be involved when planning is being devised. Their contributions such as offering alternatives to being kept indoors, or in bed, for lengthy periods can be insightful. They often need greater agency and participation in decision-making and to be allowed to make suggestions relating to activities, tactics and therapeutic interventions.

Towards more inclusive and collaborative practices

New laws and regulations relating to care in the community may envisage ambitious reforms and transformations and be hailed as ‘world-leading’ (whatever that might mean!) by politicians. However, while legislation and policy documents are useful in that they can set criteria and benchmarks, they have ultimately to be judged by the appeal and advantages of their outcomes. What really matters is the impact which they make in terms of improvements to the everyday lives of the recipients of care and their caregivers. As for current provision, in many respects there are failures to deliver core aspects of good services and facilities whether they pertain to post-diagnostic support or advanced care. Analyses of feelings and apprehensions among caregivers indicate a broad spectrum of ways in which cooperation could be developed. A comprehensive implementation of the five inter-related recommendations, briefly sketched out below, would go a long way towards bringing about significant approval and satisfaction in this regard.

1. Better procedures for distributing information. Caregivers frequently become aware of vital practices, competences or facts by accident or serendipity rather than in a systematic manner at a much earlier stage. Steps to ensure that they always receive timely and easily understood reports and updates – including topics on rights, benefits, social services, legal issues and medication – would be most welcome. This issue possibly has to be addressed most urgently at both ends of the age range as the youngest and oldest carers may not be well placed to keep themselves informed and up-to-date with recent changes and innovations in areas of interest.

2. A nominated key support professional. It is not surprising that carers often experience doubts and concerns about their abilities to undertake chores and assignments competently. They may need aid in extending their self-confidence and constant help towards the gradual building of personal resilience. Trusting relationships are at the heart of compassionate and effective interpersonal bonding. To establish what Carl Rogers termed ‘unconditional positive regard’ can be a demanding task and take a lengthy time to accomplish. For these reasons, all carers, no matter their skills and past experiences, should have a designated specialist whom they can approach in confidence about their trepidations and fears. This appointment should be reflected on and completed as early as practical – if possible around the same time as a formal diagnosis is made, or at least shortly afterwards. There also ought to be arrangements in place to regularly review and evaluate how well this partnership is working and, if apposite, to weight up whether modifications are required.

3. Collaborative involvement in the planning of personal and social support. Well-designed outlines for future goals contribute towards ensuring that there is germane and practical assistance in place for those requiring personal and/or social support (such as those experiencing physical disabilities or dementia). This is particularly critical when, as commonly occurs, a variety of specialists, agency staff and volunteers are involved in the overall process. To insure that operational decisions are expedited transparently and efficiently, carers should have regular invitations to participate with regard to identifying options, setting targets and estimating progress. In this way, they can have key roles as influential members within integrated and flourishing networks.

4. Improved access to training opportunities. There is a cogent case for an expansion of training prospects for caregivers. They deserve on-going support in improving their knowledge and interpersonal skills. Flexible arrangements and judicious scheduling are required which match the stipulations itemised during assessment of needs. Sessions aimed at upgrading knowledge and skills could cover: methods of communication; relaxation procedures; aspects of health and safety; risk assessment; note-taking; working memory, including ‘memory joggers’; navigational skills such as the use of ‘cognitive mapping’; and effective applications of modern technology. (As an example, in the case of communication, there might be tuitions and demonstrations on how to exploit pertinent techniques which comprise: employing familiar expressions or instructions; re-phrasing; repetition; pointing; signing; allowing time to receive responses; making use of photographs; and so forth.)

5. An extension of support services. The requirement to extend services is closely related to training opportunities but so important that it is worthy of a separate recommendation in its own right. The determination and resilience to endure in difficult circumstances are likely to depend on a range of complex factors such as social relationships, healthy lifestyles, backing from volunteers and connections with external organisations. At present, depending on locality, there are constructive inputs through authority-funded link personnel, carers’ cafes and friendship groups to enable shared issues to be discussed and possible solutions examined.  Nonetheless, there is substantial scope for the development of bespoke packages of guidance and coaching in a wide variety of areas, for instance: physical and mental health and wellbeing; nutrition and exercise; financial advice; and the availability of respite breaks. Further innovations in the use of information and communication technologies also could make available more productive methods to connect with those who face difficulties in being physically present.

To summarise in a few words: A much improved and extensive array of support is required for caregivers of all ages.

Carers of the world unite!