Tag: innovation

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Caregiving Health and wellbeing Inclusion

On being a “failure” as a carer – potential routes towards much better times

Frank O’Hagan

Introductory preamble

Carers often experience a wide variety of ordeals and challenges, at times totally unexpected, which damage their confidence and sense of self-assurance. Personal narratives may include: their loss of autonomy; an inability to deal with muddled and perplexed incidents or baffling patterns of behaviours; and anticipatory grief prior to a death. Their uncertainty and confusion make it increasingly difficult to eliminate shock, anguish, or guilt from being rigidly fixed within their consciousness. Sadly, marginalisation and sigma are stacked unfairly against not only those requiring support, perhaps due to a form of physical disability or dementia, but also their carers. (Bhutt, 2023).

In such dispiriting times, for instance on learning about a serious illness or experiencing a bereavement, innermost self-questioning may raise doubts about the quality of support which they had previously offered albeit to the best of their abilities. “Should I have noticed unusual behaviours or memory deficits earlier?” – “Why did I not insist on a formal diagnosis much sooner?” – “Ought I to have demanded better assistance from social services to ensure more appropriate personalised care?” Unfortunately, during periods of suffering from burdens and depression, they may wearily and despondently question their competence and ask themselves, “Am I a failure as a carer?” And, in truth, there are occasions when “It’s OK, not to be OK.”

“Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.” (Beckett, 1983)

Accepting faults and challenges

Overwhelmed and stressed by encounters which appear unsurmountable, it is not surprising to find even dedicated guardians being tempted to admit defeat. Each person’s emotional experiences of disappointment, sorrow or remorse can arise from a complex and unique interplay of occurrences. Carers have a duty to themselves to avoid becoming imprisoned by the circumstances which surround them. Instead, they benefit from adopting positive strategies for leveraging freedom and success from feelings of grief, confusion, and painfulness. It is easy to make such a statement but, of course, it can be a very strenuous itinerary which lies ahead. (Healthcare Improvement Scotland, 2023)

The starting point for recovery and progress is the identification and acceptance of the challenges which have to be overcome. This stance goes beyond just good intentions and includes a realistic appraisal of the weaknesses and problems which need to be addressed. In particular, a focus is required on ascertaining ‘what works’ best for the individual who needs care and assistance.

The next stage is the commitment to confront, fearlessly and confidently, the trials and tasks which have to be faced. Time and support may be required to develop previously unknown skillsets which are founded on evidenced-based practices. They should try not be concerned about being forced to begin with strategies which have unassuming and simple outcomes; rather, if unavoidable, to be prepared for initially having to resign themselves to making merely bite-sized strides towards planned objectives.

In short, positive action, including developing appropriate interventions, can eliminate carers’ sense of unease and of making unfair judgements about themselves due to feelings of powerlessness and psychological suffering.

“Failure is not always a mistake, it may simply be the best one can do under the circumstances. The real mistake is to stop trying.” (B.F. Skinner, American psychologist)

In search for potential solutions – ten inter-related suggestions to explore

1. Reframing – It is simply a fact that lived experiences, linked with grief and guilt, are often traumatic and extremely unmerited. When coping with recurring, deleterious thoughts and emotions, a possible solution might be to figuratively ‘park’ them to the side and disregard them for some time. By creating a period of calmness and tranquillity, opportunities to build inner resistance and to seek guidance can prove to be invaluable. Later, in a composed state of mind through clarifying and examining recurring challenges from differing points of view, possible answers and solutions have an opportunity to emerge. Examples of methods and processes for carers to learn to become more compassionate towards themselves and to gain self-control in their daily lifestyles are further examined in what follows.

“Ring the bells that still can ring/Forget your perfect offering/There is a crack, a crack in everything/That’s how the light gets in.”  (Leonard Cohen, 1992)

2. Early diagnosis – A common drawback giving rise to grave consequences is that an informative and timely diagnosis has not been made. It can be very advantageous to be in a position to take immediate precautionary action. Persons who are diagnosed with early forms of cancer or neuro-degenerative diseases frequently feel relieved to know the reasons why they have been experiencing unexplained pain, absent-mindedness, or unexpectedly being exhausted. Subsequently, carers are in a better situation to provide positive, well-directed inputs.

3. Receiving professional support – As well as those for whom they are caring, caregivers need advice on how to cope in times of crises and encouragement to bounce forward towards targeted solutions. Effective interventions will be client-centred and well attuned to the needs of carers working within their particular social environments. Likewise, when assistance is provided, attention must focus not just on the quantity of service but also on its quality and efficacy. Many feel that they endure their own unique form of meeting a ‘glass ceiling’ through being unable to access suitable and/or sufficient professional social care. For them the principle of ‘double empathy’ is absent through being overlooked or neglected behind a smokescreen of pretence and indifference. It is unfortunate that some professionals do not seem to be sufficiently aware that effective guidance, communication, and networking are integral features of expert practice.

“Assist caregivers as you would like them to care for you.” (Anonymous)

4. Training opportunities to enhance carers’ knowledge and competences – At local and national levels, there should be a much greater availability of high-quality training programs for caregivers and those in need of social care. On occasions, there would be distinct advantages for these sessions to take place with both groups present. Well-informed, skilled caregivers will extend the ‘social capital’ and general wellbeing of any nation-state. Additionally, if professional health and social help are falling short – such as through excessive bed-blocking in hospitals or breakdowns in the delivery of services – it makes good sense to make certain that all caregivers are equipped with the necessary competences to guarantee that disadvantaged persons have essential provision. In brief, much greater availability of high-quality training programs for caregivers would not only be beneficial to them but also result in increased inclusiveness for persons with ailments such as neuro-regressive deficiencies.    

“People with dementia and carers are keen to see the development of new approaches to person-centred care based on human rights principles of dignity and respect. People with long term needs want to be empowered to choose the type of care and support they would like.” (Alzheimer Scotland, 2024)

5. Relationships – Building connections will help to dispel loneliness which often is accompanied with feelings of uncertainty and neglect. To paraphrase the well-known quotation of John Donne, ‘No carer should be an island, alone to oneself.’ Of course, there is a distinction between ‘being lonely’ and ‘being alone’ – time on their own, as in enjoying periods of solitude, might well be highly cherished by harassed carers. However, having trusted companions opens opportunities for overcoming and removing mental barriers, lifting a sense of guilt, and boosting the subconscious self. Sharing confidential narratives with other carers who have experienced similar challenges is a powerful way of learning how to avoid mistakes and to ascertain what works best in differing situations. Studying good practices and learning about the solutions which others have discovered are to recommended.

6. Seeking help from others – Dedicated carers frequently run the risk of neglecting their own personal and social needs, suffering from weariness and exhaustion, struggling to undertake their caring responsibilities, or being often late for or absent from work. Additionally, young guardians are seriously disadvantaged through missing lessons at school or training opportunities. Whatever their circumstances, they should never be afraid to reach out when they need advice and guidance. Their voices deserve to be heard though they may find difficulties in expressing their constraints and requirements. Occasionally, carers may experience a sense of ‘imposter syndrome’, associated with the belief that they do not have the potential to acquire the knowledge and competences which will contribute to positive change. They should seek guidance and, if it is not forthcoming, contact a relevant charitable organisation or join a campaigning team of well-intentioned activists who also are seeking advancements in social care. Given appropriate circumstances, self-disclosure of disadvantages and weaknesses often results in many beneficial outcomes (Robson, 2024).

Take care of yourself. Stay safe. And, of course, always remember that you matter!

7. Self-care – Linked with seeking assistance is the importance of cultivating worthwhile self-care practices. In place of worrying and agonising about impending predicaments, carers ought to focus on creatively and confidently planning their futures – focussing on the ‘now’ rather than being troubled about what might lie ahead; building resilience to distressing events; learning to treat themselves with respect; maintaining a balanced lifestyle to control tiredness and burnout; and giving time for recreational activities and favourite pastimes.

8. Discovering useful resources – In recent years, researchers, technologists, and therapists have produced a very wide range of information manuals and devices which can inform and back carers in undertaking their duties in an expert manner. It is always useful for carers to have opportunities to learn more about efficacious ways of benefiting others. These range across use of medications, assistive technological devices, physical equipment, therapeutic activities, contributions from allied health professionals, and so forth. Carers should not hesitate to ask for relevant information and guidance. (Seek potentially useful advice regarding “top tips” on topics such as home safety and security, use of technology, engaging with companies and service providers, etc. – for instance in a publication by The Scottish Dementia Working Group, 2024). Carers should describe and discuss their successes and botches with experienced guardians and specialists. In doing so, they will be able to acquire relevant skills and develop strategies which build personalised interventions to proficiently fulfil their responsibilities. In many cases, paid employment for highly skilled carers to participate at home in supporting their partners, children, and relatives could save the nation a great deal of money.

9. Social Prescribing – ‘Social Cures’ – Injustices and inadequate social care are interconnected, as are loneliness and mental health. Being able to identify structural and environmental barriers which hamper carers’ efforts is important (Scottish Government, 2023 and 2024). Gatherings – involving hobbies, leisure activities, and special interest groups – provide one way to establish networks and ‘human scaffolding’ which enhance rehabilitation and resilience. Furthermore, engagement in available therapeutic interventions – for instance mindfulness, yoga, nature walks on one’s own or in an organised group, and artistic, musical, and creative activities – are worthy of consideration. Carers will learn to thrive and become more effective through gaining a sense of connectedness and in countering gloom and misinformation, such as misanthropes suggesting that their loved ones cannot live well with dementia. Effective carers have a role in being beacons of hope. Through providing an informed and powerful active voice, they are in a commanding position to reinforce a national movement towards more speedy improvements in social care. 

10. Maintaining an affirmative outlook – Identifying and acknowledging mistakes and failures provide a robust foundation from which carers foster assurance and construct positive problem-solving strategies. An optimistic mindset will contribute towards smoothly dispelling trauma, guilt, and pain. Ideally, private lows are transformed into learning opportunities; negativity and self-doubt being replaced with hope and a determination to succeed. There are many effective approaches to be acquired through listening to the personal experiences of others who have overcome similar obstacles. Through receiving beneficial guidance and backing, carers come to realise that they are not alone. They learn to combat marginalisation, stigma, and humiliation. A cheerful frame of mind, firmly based of a sense of realism, holds a wide range of advantages over a pessimistic one, and includes the safeguarding of a healthy lifestyle (Hood, 2024).

“Si fallor, sum.” – “I err, therefore I am.” (St Augustine of Hippo, early 5th century CE)

The process of healing – towards much better times

All carers are likely to have occasions when they fall short of their aspirations. Regularly, it is painful and exasperating for them to observe those whom they love weakening and gradually losing meaningful contact with their surroundings. The concept of healing in this context applies appropriately to carers empowering themselves to bounce forward from a position of angst or heartache and thus to avoid slipping into a condition of depression or neurosis. (It is noteworthy that the term ‘healing’ is derived from the ancient word ‘haelen’ which pertains to ‘wholeness’ and ‘to making whole’). Often first-rate help is available but in practice hard to secure. However, though the quality of circumstances and access to services will differ, it is crucial that carers remain resilient and make steady progress. Undoubtedly, the ability to adopt an open-ended frame of mind, backed by genuine fervour and well-directed consultation, is advantageous in times of despondency.

References and Footnotes

1. St Augustine of Hippo (early 5th century CE) The quotation “Si fallor, sum.” (“I err, therefore I am.”) is from the philosophical treatise, De Civitate Dei XI, 26 (“The City of God”). This often-quoted expression can be taken to mean that, though humans make mistakes, appropriate responses to failures can result in successful achievements.

2. Beckett. S. (1983) The quotation “Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.” is from Samuel Beckett’s “Worstward Ho” (1983). (OK, I realise that this quotation is only part of a pretty dispiriting message. However, it certainly can be argued that it is advantageous if there is at least an element of hope contained within our failures.)

3. Cohen, L. (1992) The quotation “Ring the bells that still can ring/Forget your perfect offering/There is a crack, a crack in everything/That’s how the light gets in.”  is from Leonard Cohen’s famous song, “Anthem”, which featured in his 1992 album “The Future”.

4. Healthcare Improvement Scotland (2023) Scottish Intercollegiate Guidelines Network SIGN 168 – Assessment, diagnosis, care and support for people with dementia and their carers.

5. Bhutt, J. (2023) Carers of people living with dementia experience discrimination. UCL News 6 January 2023.

6. Scottish Government (2023) – Social isolation and loneliness: Recovering our Connections 2023 to 2026: “A Plan to take forward the delivery of A Connected Scotland – our strategy for tackling social isolation and loneliness and building stronger social connections.”

7. Scottish Government (2024) – Commission on the Future of Long Term Care in Scotland report.

8. Hood, B. (2024) The Science of Happiness: Seven Lessons for Living Well. (Published by Simon and Schuster).

9. Robson, D. (2024) – The Laws of Connection: 13 Social Strategies That Will Transform Your Life. Published by Canongate.

10. Alzheimer Scotland (not dated) – Grief & bereavement: Resource pack. Alzheimer Scotland’s Grief & bereavement: Resource pack outlines information concerning theories on grief along with related practical matters, coping techniques, adjusting to change, and looking after yourself. A bereavement and grief leaflet can be ordered from all Brain Health and Dementia Resource Centres across Scotland.

11. The Alzheimer Scotland Dementia Working Group (2024) Our “Top Tips” for living well with dementia. Alzheimer Scotland: Action on Dementia.

Linked blogs include:

1. Good Practices: Good Mental Health among Carers https://improvingcareand.education/home/good-mental-health/

2. 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 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/