Tag: Support for carers

Caregivers play an important role in modern society by providing a very wide range of assistance on behalf of vulnerable persons. To perform their responsibilities effectively, they often require suitable information and/or training. Forms of support can include passing on details about financial benefits and respite care. Additionally, appropriate training opportunities need to be made available across a variety of areas in order to enhance their skills.

Categories
Caregiving Collaborative planning General Health and wellbeing Inclusion

Communication Matters

Frank O’Hagan

Introduction

Carers always need to be mindful that, as far as dementia is concerned, communication can be both complex and tricky. It calls for careful consideration being given to aspects of talking, listening, reading, writing, and technological usage. Each of these forms of communication is multi-faceted and may overlap with others to some extent. Thoughtfulness and sensitivity are required in the use of both verbal features such as speaking, writing messages, labelling, singing, and non-verbal aspects for instance pointing, signaling, touching, and so forth. All have a role to play in ensuring that clear-cut messages are conveyed meaningfully and efficiently.

The effectiveness of exchanges is dependent on the quality of a person’s physical wellbeing (such as hearing and sight), mental health (for example, awareness and comprehension), interpersonal skills (abilities in relating to others), and context (whether at home or in an unfamiliar place, levels of noise, and interruptions, etc.) Caregivers have the task of taking full account of these variables every day and sometimes even on a moment-to-moment basis in a period of crisis.

Although this post is focused mainly on communicating with persons experiencing dementia, the ideas presented may also be supportive for others with hearing loss, suffering from trauma-induced problems, or having significant learning impediments. The good news is that it is amazing how dedicated carers can intuitively acquire appropriate competences to communicate capably in a variety of situations. They quickly discover that little things can enhance the quality of person-centred communication. Key skills include being a patient and expert listener, keeping questions straightforward, and never causing any feelings of humiliation or embarrassment.

Strategic approaches to think through

When trying to understand the nature of communication difficulties, attention to changes concerning the symptoms of dementia, making the most of existing circumstances, asking appropriate questions, and having the ability to cope with ‘outsiders’ are of importance (Volkmer, 2023). In practice, there is a wide range of beneficial interactions to employ during everyday pursuits. Depending on the needs of people with dementia and the setting, some methods will prove to be more successful than others. Routines to bear in mind might include the following.

1. When addressing persons, face them directly and state their names at the beginning of the conversation to gain attention and to show a genuine interest in their opinions.

2. Be on the outlook for confused or puzzled expressions which indicate that you are not being understood.

3. Avoid statements or requests which are too intricate for the listener. Now and then, Joseph Priestley’s warning is pertinent –“The more elaborate our means of communication, the less we communicate.”

4. Re-phrase, or repeat succinctly, if a suggestion is not being conveyed adequately. Give the listener sufficient time to reply to comments and questions.

5. Try your best to prevent anyone from ‘talking over’ or ignoring a person experiencing difficulties and only conversing with you.

6. To ensure that the topic or object which is being discussed is clearly comprehended, it is often helpful to explain and to point simultaneously.  (Illustrations: (1) When going out for a walk to say “Let’s go now”, point to the door, and then open it. (2) When planning to take a drive in the family car, drawing attention to the passenger seat and inviting the person to get in.)

7. Good use can be made of photographs, keepsakes, poetry, and music to recall pleasant memories. This approach – which gradually might become a shared ‘life story’ – could be particularly constructive when individuals are unsettled or distressed. If asked to switch on a playlist of favourite songs, do not be surprised if they join in singing and know all the words, even if at an advanced stage of dementia. Words which you may have forgotten!

Additionally, if you have the opportunity, please consult the ‘Footnotes’ towards the end of this article for hints which may be of value when communicating with someone who has dementia.

Addressing challenges which caregivers may encounter

Carers can enhance the quality of their own lifestyles, and those of persons for whom they care, by way of their well-judged management of practices and resources which help to administer and structure busy schedules (NHS Health Scotland, 2013). Communication, in a wide-ranging and all-embracing perception of the term, can encompass some or all of the undermentioned procedures.

1. Devising comprehensive checklists to cover all essential aspects of maintenance and safety in the home such as locking the main doors particularly at night-time, closing windows, how to control the central heating system, etc.

2. Sticking notices or ‘post-its’ in prominent places as reminders of when to engage in pastimes or recreational interests, have meals, and carry out household chores.

3. Placing labels – maybe combined with colour-coding – on drawers, wardrobes, and cupboards to make it easy to find clothing, shoes, and utensils (Scottish Dementia Working Group, 2017).

4. Making use of a traceable security wallet to safeguard items which might frequently be misplaced or lost such as keys and tickets.

5. In addition, utilising technological appliances can be of great value in the forward planning of weekly duties and responsibilities. In the case of those facing difficult circumstances, programs can be devised to remind or alert carers about their timetable for tasks concerning dressing, toileting, medication, meals, outings, and so forth. Technologies also are supportive in: sending out up-to-date information on local events; providing friendship toys, games, quizzes, and other forms of entertainment; tracing someone who is missing; and directly contacting friends, neighbours, or social services when emergencies arise. 

“Communication is one of the most important skills you require for a successful life.” (Catherine Pulsifer)

Some further comments regarding non-verbal communication

Various forms of non-verbal communication, usually together with speech, are advantageous in the course of transmitting and reinforcing advice and guidance. These include:

1. Gestures – perhaps raising a thumb or clapping to communicate approval for an achievement. Likewise, ‘body language’, for example facial expressions such as smiling will show happiness and pleasure whereas grimacing will convey disapproval.

2. Modelling techniques – to demonstrate how to carry out specific practical activities (e.g. carefully showing someone how to use a remote control; or to stand in the correct space for taking a shower, and then asking for your actions to be copied). 

3. Mirroring (occasionally referred to as adaptive interventions) – to follow or adjust to the same or similar styles, signs, sayings, and habits as the person who is being helped. In this way, a carer can learn how best to simulate and employ an individual’s preferred processes of communicating. 

4. Showing love and affection – to send very positive and uplifting messages. For instance, when someone living with dementia is having a bad day, a gentle hug may be sufficient to bring solace. Similarly, it is no surprise when a kiss from a partner, a child, or grandchild turns out to be a powerful means of restoring self-confidence and assurance.

A cautionary note: “Not all tools and techniques will be suitable for every individual or every time, and so a modifiable suite is recommended to allow adaptation, for example, as dementia further progresses.” (Collins and others, 2022)

Supporting carers

All carers require social meetings during which they can share their lived experiences with others in order to evaluate their own inputs, learn about best communicative practices, and gain added knowledge of ‘what works’ when challenging occasions occur. Effective forms of collaboration are essential in ensuring that ‘living well with dementia’ becomes the norm within modern society.

Carers deserve and will profit from expert professional advice and assistance to enable them to extend their interpersonal skills including those pertaining to consultation, communication, and the exchange of ideas.  Nationally, they will benefit from more breaks to learn about current developments, hone their strategic competences, and evaluate which technological inputs would be most appropriate to meet their requisites.

A consistent message to carers must be to remember that they always should take good care of their own health and wellbeing. Importantly, they require to have opportunities in ascertaining on how best to relax, particularly after stressful incidents, perhaps by way of engaging in artistic activities, listening to music, watching a comedy series on television, or taking a mindful walk.

As a carer, you are an indispensable agent in safeguarding and maintaining high quality support. Your compassion and expertise matter. You matter!

Footnotes

An information sheet of Alzheimer Scotland provides the following ‘12 helpful hints’ when communicating with someone who has dementia. (1) Be calm and patient; (2) Face the person, speak clearly and slowly; (3) Make sure that you have their attention by gently touching their arm and saying their name; (4) Use short, simple sentences and say exactly what you mean; (5) Try to get one idea across at a time; (6) Allow plenty of time for the person to take in what you say and to reply; (7) Try not to confuse or embarrass the person by correcting them bluntly; (8) Use questions which ask for a simple answer; (9) Don’t ask questions which test their memory. e.g. ‘Who am I?’ or ‘What did you do yesterday?’; (10) Talk about familiar people, places and ideas; (11) Use the names of the people you are talking about instead of ‘he’ or ‘she’. It will remind the person of who you are talking about; (12) Use facial expressions and hand gestures to make yourself understood. (Alzheimer Scotland, 2023)

Additionally, other suggestions regarding communication and dementia are available on the Better Health Channel and, for good mental health, in an article entitled ‘Good Practices: Good Mental Health among Carers’. (See links in References below.)

References

1. Volkmer, A. and others (2023) – Giving Voice to People with Dementia and Their Carers: The Impact of Communication Difficulties on Everyday Conversations. International Journal of Qualitative Methods, Volume 22.

2. NHS Health Scotland (2013) – Younger people with dementia. Living well with your diagnosis.

3. Scottish Dementia Working Group (2017) – Our “Top Tips” for living well with dementia. Alzheimer Scotland – Action on Dementia.

4. Collins, R. and others (2022) – Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme. Dementia, Volume 21, Issue 4.

5. Alzheimer Scotland (2023) Activities: a guide for carers of people with dementia. Link to communication: https://www.alzscot.org/our-work/dementia-support/information-sheets/communicating-with-someone-who-has-dementia-12-helpful-hints

6. Better Health Channel link: http://www.betterhealth.vic.gov.au.dementia-comunication

7. ‘Good Practices: Good Mental Health among Carers’ link: https://improvingcareand.education/home/good-mental-health/

8. A related animation entitled ‘Communication Matters: The Little Things Which Can Enhance the Quality of Person-Centred Communication’ has been designed and produced by Caitlin Quinn and Lucy Beckett.

Acknowledgements

My thanks are due to Professor Elaine Hunter, National Allied Health Professions Consultant, Policy and Practice, and Visiting Professor, School of Health and Social Care, Edinburgh Napier University, and also to Caitlin Quinn and Lucy Beckett, students of speech and language therapy, University of Strathclyde, for their very helpful support and for providing splendid company during the writing of this paper.

Categories
Caregiving Collaborative planning Health and wellbeing Inclusion

Music as the Carer’s Friend and Assistant

Introduction

From time to time, carers can be bombarded with demanding chores and, in turn, experience stress and burnout. Unfortunately, there are many occasions when distress is pathologized and medication prescribed when it would be more appropriate to focus on recommending a social remedy. This might comprise engagement in some form of purposeful alliance such as a testing physical fitness program. Alternatively, it could be within a more laidback leisure groups involved in singing, walking, bowls, gardening, and so forth. However, caregivers also may find it difficult to identify appropriate recreational pastimes in which they can meaningfully engage along with those for whom they are caring. Understandably, it is often worthwhile to spend some time checking and evaluating the suitability of what pursuit best matches their needs.

A recent meta-analysis has indicated that “…both social isolation and loneliness were significantly associated with an increased risk of all-cause mortality …” This research suggested that “Greater focus on social isolation and loneliness may help improve people’s well-being and mortality risk.”(Wang, Geo, Han, and others, 2023) Undoubtedly, the presence of genuine camaraderie can lead to life-long friendships and help to avoid and sweep away sensations of loneliness and estrangement. Membership of a social grouping, either together or separately by carers and those in need of their support, offers genuine participation in communal interests. Involvement requires both responsiveness and commitment, setting aside preoccupations and uneasiness, and has the potential to boost ‘feel good’ sensations. In particular, participation in a wide variety of musical activities and events is now widely acknowledged to be a noteworthy font of health and wellbeing.

Providing solace and putting aside for a time worries concerning daily struggles can be achieved through contributing to and sharing in music of one form or another. This can pertain to differing ages and ailments. By way of illustration, two examples from very distinct settings, one relating to youths facing challenges and another to persons with dementia are very briefly outlined.

(1) Among young people from lower social-economic backgrounds or those experiencing special educational needs and/or physical disabilities the value of inclusive music-making can be very beneficial. This viewpoint was supported by an investigation which reported that its observed results demonstrated, “… the importance and value of music engagement, especially as the means of empowering marginalized groups of young people and addressing the inequalities in today’s society.” (Levstek and Banerjee, 2021)

(2) There also has been an interest in the worth of music therapy in reducing distress for persons experiencing dementia. For instance, when comparing those in a hospital environment receiving in-person music therapy and those who did not, researchers found music therapy “…to be a valuable intervention, supporting patient mood and reducing agitation.” (Thompson and others, 2023)

“Where words fail, music speaks.”  (Hans Christian Andersen)

Singing, songwriting, listening, and dancing  

The persons for whom you are caring may have a particular suite of songs and tunes which they prefer – pop, jazz, country, ballads, classic, songs which they themselves have helped to compose, etc. – or they may have an eclectic taste and simply favour specific ones from across a spectrum of differing categories. For this reason, it is advantageous to explore their likes and dislikes and to observe their reactions and behaviour when melodies, along with their musical accompaniments, are being performed. Ensuring that they are involved as much as possible also will provide carers with opportunities to relax or to join in songs which enthuse them.

Moreover, listening to music involves various sectors of the human brain and can stimulate cognitive skills. Research has indicated that it can also improve cortical health and emotional wellbeing. On many occasions, it appears to enhance memory and foster thoughts of pleasant happenings from the past. These could relate to personal achievements, family weddings, the birth of children, holidays, and so forth. Similarly, attending a concert or pantomime may evoke very blissful and/or nostalgic reminiscences. Creating personalised playlists (discs which only contain much-loved performances) are very helpful for both those in need of support and their caregivers. They make available periods of joyful interludes while partaking in peacefulness and reflection.

“Music has the capacity to engage auditory, cognitive, motor, and emotional functions across cortical and subcortical brain regions and is relatively preserved in aging and dementia. Thus, music is a promising tool in the rehabilitation of aging-related neurological illnesses, such as stroke and Alzheimer disease.” (Teppo Särkämö, 2018)

There is a wide range of activities which can be organised to extend participation and potential benefits – well-chosen quizzes to foster recall of favourite performers, bands, and orchestras from bye-gone days; games involving compositions, such as ‘name that tune’, to encourage discussion and teamwork; karaoke, if contributors are confident enough, to boost engagement in individual or collective performances; and dancing, as well as being fun, to facilitate and maintain physical fitness. One ambitious event witnessed was an online transatlantic competition – a version of ‘juke box jury’ focusing on British and American pop groups and their hit songs – between teams from USA and Scotland.

Participation in choirs

Genuine membership and affiliation within a choir will ensure that all members have roles which deliver their own distinct and harmonious contributions. When well-managed, it is democratic, as opposed to having a pyramidic structure, in that there is a sharing of responsibilities. Teamwork is a key feature. Choral groups possess the power to bring about and sustain a collective ethos of solidarity, encouraging accountability and dexterity in conjunction with enriching sensations of comfort and self-assurance. Togetherness acts as a mediator for affirmative change and the enhancement of both consciousness and interpersonal skills. Public performances which are appreciated by audiences add to the pleasure of having taken part.

Inclusive choirs can act as catalysts for the improvement of feelings, comprising a fortuitous mixture of both oneness and togetherness, possibly through the stimulation and strengthening of neural pathways. Importantly, they can present opportunities for enjoyment within a therapeutic setting which offsets loneliness, anxiety, and depression among vulnerable people. The fusion of personalities within the group, regardless of perceptible troubles or additional support needs, augments mental toughness through boosting autonomy and empowerment. Members are able to take part within caring and friendly contexts in which individuals can express themselves openly and honestly, without any sense of threat or fear. This is not to say that there may be challenges to confront and overcome. Nonetheless, skilful leadership can nurture opportunities vis-à-vis creativeness and intimacy, enabling participants to experience hope and to recognize their own progress regarding security and self-worth.  

“Inclusive choirs promote social inclusion by providing the opportunity for persons living with dementia, caregivers and volunteers to sing together as equals.” (Jean-Bernard Mabire and others, 2020)

Summary and concluding comments

Although some of us may lack enthusiasm and may not benefit from musical activities, for many persons research studies have indicated opportunities for positive outcomes. Listening to music, singing, songwriting, and participation in dances can all provide relief from psychological distress while also being a buttress for emotional resilience and touchstones for building self-esteem. The off-loading of worries and concerns can generate a platform from which to establish buoyancy and vigour. Inclusiveness endorses self-worth for persons with additional educational needs, neurodegenerative diseases, or experiencing social marginalization. Music therapy has a significant role to play in mental health interventions, repairing ruptures in personal relationships, and assisting in recovery from abusive behaviour and trauma. It may also alleviate sleeping and nutritional obstacles and engender a basis for good brain health.

In recent years, there has been an awakening of the constructive part which the arts have to play in social prescribing on the topic of health and wellbeing for those who experience debilities, deprivation, and exclusion. Despite much progress in modern society, they have undergone circumstances which have eroded their confidence; they have become too cautious, defensive, and isolated. Anxiety and trepidation prevent them from cultivating an enriched lifestyle comprising advantageous friendships and recreational activities. Involvement in choral singing often gives rise to affirmative surges within a continuum of emotions. In practice, its powerfulness to transcend existing apprehensions and angst is truly remarkable. Participation can thrust unwanted sentiments away from sorrow and regret towards a consciousness of serenity and joy. A major benefit is the personal social-emotional experiences of self-control, insight, meaningfulness, responsibility, and the achievement of shared objectives. Collective endeavours can be targeted at overcoming feelings of stress and weariness, replacing burnout with tranquillity.

“Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.”  (Plato)

Acknowledgements and references

1. Wang, F., Geo. Y., Han, Z., and others (2023). A systematic review and meta-analysis of 90 cohorts of social isolation, loneliness and mortality. Nature Human Behaviour 7(8), 1-13.

2. Levstek, M. and Banerjee, R. (2021). A Model of Psychological Mechanisms of Inclusive Music-Making: Empowerment of Marginalized Young People. Music and Science, Volume 4. Published online by Sage Journals: 2021.

3. Thompson, N., Iyemere, K., Underwood, B. R., and Odell-Miller, H. (2023). Investigating the impact of music therapy on two in-patient psychiatric wards for people living with dementia: retrospective observational study. BJPsych Open: Published online by Cambridge University Press: 2023.

4. Särkämö, T. (2018). Cognitive, emotional, and neural benefits of musical leisure activities in aging and neurological rehabilitation: A critical review. Annals of Physical and Rehabilitation Medicine, Volume 61, Issue 6, pages 414-418.

5. Mabire, J-B., Bouaziz, N., de Malherbe, A., and Charras, K. (2022). Activities, Adaption and Aging (Dignified and Purposeful Living for Older People) Volume 47, Issue 4, pages 501 – 518.

Links to overviews of other potentially good practices for consideration:

  1. Good Practices: Ten Things to be Getting On With? https://improvingcareand.education/home/ten-things-to-consider/
  2. Good Practices: Collaborative Inputs from Professionals https://improvingcareand.education/home/professional-inputs/
  3. Good Practices: Good Mental Health among Carers https://improvingcareand.education/home/good-mental-health/
  4. Good Practices: Contributions from Voluntary Care and Support Groups within Local Communities https://improvingcareand.education/home/voluntary-care-and-support-groups/
  5. Good Practices: Mindfulness – How Might It Meet Your Needs? https://improvingcareand.education/home/mindfulness/
  6. Good Practices: Adopting a person-centred bio-psycho-social approach to enhance health and wellbeing for those experiencing dementia https://improvingcareand.education/a-person-centred-bio-psycho-social-approach/
  7. Good Practices: Walking Football https://improvingcareand.education/walking-football/
  8. Good Practices: Enhancing Brain Heath – biological research, technologies, lifestyles https://improvingcareand.education/enhancing-brain-health-biological-research-technologies-lifestyles/
Categories
Caregiving Health and wellbeing Inclusion

Approaches towards inclusive living for people in need of care

A satisfying existence

Inclusive living for people in need of care has a number of distinctive characteristics comprising: (1) living contentedly in their 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. 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 afford 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. 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.  

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)

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. The potential benefits of community support in action https://improvingcareand.education/23/02/07/community-support-in-action/

Categories
Caregiving Collaborative planning Health and wellbeing

The potential benefits of community support in action

Frank O’Hagan

Aims

The consequences for carers being occupied in meeting the daily demands of their routines and household duties, often both hectic and nerve-wracking, require close attention. Problems may include low self-esteem, stress, anxiety or depression. Let’s face the grim fact that social care has been neglected, locally and nationally, and is in need of urgent reform. Be sure to access and consult civic authorities, websites and other sources of information to remain well advised and updated. It is crucial for you, and persons for whom you are caring, to be fully notified about mutually agreed plans, formal procedures, financial entitlements, and available resources. (As one dedicated carer who had tried hard to seek advice remarked, “You don’t know what you don’t know.”)

Overall, there has been a lack of means and relevant occasions – for both caregivers and persons in need of care – regarding the organising of training sessions and the managing of social activities. Nonetheless, there are many examples of a very high standard to be found. Improving and extending opportunities for carers, not only to engage in boosting their knowledge and skills, but also to have time for relaxation and for completing essential chores are among the many aspects of importance calling for scrutiny. A collective challenge must undoubtedly be to identify best practices and to replicate them across communities.

The main objectives of this brief article are to encourage caregivers to: (1) seek out the various helpful facilities which exist in their localities; (2) evaluate how applicable they are as regards meeting the personal, emotional and social needs of those for whom they are caring; (3) make sure that the necessary steps are specifically included within care plans in order to attain the most relevant and appropriate provisions; and (4) foster cooperation along with colleagues, charities and altruistic associations in publicising examples of wholesome interests and schedules which enhance enthusiasm, wellbeing and inclusiveness among those in most need.

Some examples of communal involvement

Information and training events – It is imperative that, from the initial stages of assuming their responsibilities, carers enquire about and ascertain the full range of professional and voluntary facilities which are available to assist them. They must not hesitate to take the necessary steps to ensure that they are given expert advice and detailed facts about amenities and opportunities for well-targeted instruction. When possible, listening to and learning from the experiences, tribulations and successes of others can be extremely advantageous. By making good use of relevant organisations and websites, there are openings to remain apprised about beneficial interventions and projects. It also is important that caregivers are considerate and thoughtful as regards their own general health and welfare.

Friendship gatherings – Since the time of Samuel Smiles (1812-1904) there have been many publications, and more recently items on social media platforms, emphasising the importance of self-help. Given the dangers of burnout and ‘compassion fatigue’, carers ought to safeguard times for resting, investigating and fact-finding. Regular get-togethers, perhaps even timetabled coffee and lunch appointments, not only possess the capacity to strengthen camaraderie but also to be instructive and empowering. They create platforms for conversation and debate within safe and casual settings. In a real sense, they incorporate the characteristics of informal counselling and learning, resulting in constructive perspectives and insights on the problem-solving solutions which have been adopted by acquaintances.

Social outings –– Visits and day expeditions can offer periods of leisure and respite. They also may be convenient for sharing ideas and considering future collaborative enterprises and networking. However, caregivers may find it difficult, even be affected by a sense of guilt, when they leave on an excursion without those whom they support. Good planning, including timetabling and suitable cover for their dependents if not in attendance on a trip, is vital. Three brief illustrations: (1) a national charity arranges a bus journey for carers to visit and enjoy afternoon tea in a historical building, allowing time to appreciate the congenial surroundings, make new contacts and discuss concerns; (2) volunteers from a local church energize bonds within their care group by means of undertaking a soothing and interesting voyage by barge on a nearby canal; and (3) professional trainers set up a series of outdoor walks in tranquil, open spaces to raise spirits and give time for meditation.

Recreational activities — Commendably, accessibility to engage in their preferred forms of recreation – at their own individual levels of ability and within a friendly atmosphere – are now available in a wide variety of locations for those experiencing physical and mental disabilities. These include rambling, gardening or working in allotments, dancing, bowls, tennis and other pursuits. For example, the advent of walking football has provided refreshing possibilities for exercise and involvement at sports centres and outdoor facilities. Since its introduction, it has gained in popularity for persons with ailments, such as poor coordination. It has a set of rubrics which, for those requiring additional aid, can be applied in a flexible manner to suit the competences of participants and their prevailing conditions.

‘Tech talk’ – In recent years, there has been an explosion of ways in which the proficiency of social care has been developed through a variety of differing technologies, including pertinent searches on the internet. Joining coaching sessions, served by a facilitator skilled in handling software, holds the potential for learning about the advantages of a wide range of assistive devices. Efficient applications of technology offer much by way of discovering how assistance can be undertaken in a flexible, individualised manner. It is not surprising that caregivers often feel that they form a hidden and neglected community. Technological innovations present chances for enhancing security, strengthening inclusiveness, stimulating a genuine culture of companionship, and making learning and training occasions much more rewarding and straightforward.

Mindfulness — There certainly appears to have been a boom in the attractiveness of mindfulness as a pastime in modern society. As an activity, it has much in common with Buddhist and meditational traditions and is associated with the development of general wellbeing among both individuals and groups. It helps to ensure active, continuous, unrestricted and non-judgmental awareness being fully maintained from moment to moment. Participation in shared gatherings takes many forms depending on circumstances. A desired aim is to guarantee that everyone is in a good position to engage as fully as feasible. Supporters emphasise its usefulness in cultivating positive feelings and in alleviating various unwanted problems such as anxiety and stress. Both relevant guidance and well-directed assistance are recommended in order to reap the full benefits of its usage. As with other therapeutic methods, mindfulness is not necessarily suitable for everyone. My personal opinions about the practice are not intended to suggest that it is a panacea for all situations or challenges.

Sporting memories — There are various kinds of group activities which focus on a combination of connectiveness, conviviality and personal recollections, specifically devised for older people who are experiencing some form of memory loss.  These include: ‘football memories’ – with a focus on past football personalities, matches and associated occurrences which can be recalled and, as accustomed among enthusiasts, eagerly debated; and ‘a whole new ball game’ – a similar entertainment and interest only that it covers a wider choice of sports, for example, golf, hockey, rugby as well as football. (Stories from bygone days may turn out to be quite hilarious – a well-known character playing hockey with a cigarette in his mouth!; a goal keeper with cans of alcoholic drinks propped up beside a goal post!)

Musical moments and movements – It is no surprise to come across occasions when singing and dancing are periods of delight for both carers and those in their guardianship. For instance, membership of a choir and presence at a concert or pantomime may evoke very blissful and/or nostalgic reminiscences. Joint games, such as ‘name that tune’, can be arranged to encourage discussion and teamwork; karaoke and dancing to inspire individual or collective performances; and quizzes to foster recall of favourite gigs and musicians. One ambitious event witnessed was an online transatlantic competition – a version of ‘juke box jury’ focusing on British and American pop groups and their hit songs – between teams from USA  and Scotland.

Further references —

A related article, entitled, ‘Good Practices: Ten Things to be Getting On With?’, at: https://improvingcareand.education/home/ten-things-to-consider/

For a more detailed post on “Technology at work on behalf of persons being cared for and their caregivers”, please use the link: https://improvingcareand.education/2022/10/25/technology-at-work-in-social-care/

For more detailed comments on the topic of mindfulness, please use the following link:  https://improvingcareand.education/home/mindfulness/

For more detailed comments on the topic of walking football, please go to the following link: https://improvingcareand.education/walking-football/

Acknowledgements

Although the views stated in this article are my own, I am very much indebted to committed field workers who dedicate so much of their time to helping and advising caregivers. In particular, I wish to thank: Anne O’Donnell, Jo Berry, Katy Green, Douglas Kenny, Neil Stobie and Drew Wilson. 

On “Duplicating examples of positive practice” – “Many of our participants shared examples of local practice that are positive and make a difference to their lives. Most people felt that it was important to learn from these examples and understand more about what makes them work well in order to spread them around the whole country. People felt that there were missed opportunities through failing to replicate the best practice on a larger scale and developing the services that work well.”  Quotation from the Alzheimer Scotland Public Engagement Response (December, 2022).

Categories
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!