Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Background Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodness of fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

We report a rare association of spinocerebellar ataxia and motor neuron disease (MND) in a woman with genetically confirmed SCA2 who subsequently developed a rapidly progressive and fatal form of MND. Considering the rarity of these two neurological conditions, it is interesting to note that the concomitant occurrence of SCA mutations and MND have been previously observed in three cases: in one patient affected by SCA6 and two other cases with SCA2.

In 2016, twenty people with Motor Neurone Disease (MND) in the Lancashire and South Cumbria region were admitted and died in hospital. Following a meeting in early 2016 with the MND Association, the local hospices were approached to consider how the MND ice bucket challenge money could be utilised for future MND patient support. From this, local MND Association staff met with St John’s Hospice staff to look at how the hospice could support MND patients through our already existing services. The group looked at the gaps in services and staff knowledge, what causes a crisis leading to hospital admission, and what skills are required to keep people with MND at home, if that is their preferred place of care and death. The main issues often leading to admission were documenting and managing advance care planning; supporting cognitive impairment difficulties; and supporting family carers using practical skills such as taking blood gases, managing non-invasive ventilation (NIV) and using cough assist devices. For family support and education, the day services team set up a ‘STAR’ group (Support, Time-out, Advice, Recovery: named by the attendees) for people with MND and their main carer. This addressed advance care planning; hospice services and what they can provide; support to carers; nutrition, and speech and language advice. This would run weekly, following on from the quarterly MND clinics, for four weeks. The team also set up a successful MND study day for professionals, which was well evaluated and covered diagnosis, prognosis, and symptom management. The Hospice at Home and ward teams are presently being developed in the practical skills listed above, in order to support people to stay in their own homes when near end of life. An update on this work will be included in the poster.

BackgroundA legacy was received by the Wirral Branch of the Motor Neurone Disease Association to improve the experience of people with Motor Neurone Disease (pwMND) on Wirral. Challenges faced by...

Background Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

ObjectiveThere is an immense socioeconomic burden for both the patients with motor neuron disease (MND) and their families. The aim of this study is to evaluate the extent to which...

Background: Motor neurone disease (MND) is an incurable neurodegenerative condition. Recent guidelines from the MND Association UK (MNDA) emphasise prompt diagnosis and monitoring of quality of life (QOL). However, primary literature indicates that diagnosis is often delayed through several factors, including unawareness of how MND presents and delays through multiple secondary referrals. The [hospital] operates an internationally-recognised MND clinic whose service has not been audited against the MNDA UK guidelines for the last 3 years.Aim: To assess how well the MND consultant’s service ensures prompt diagnosis and the provision of end-of-life care or appropriate respiratory or nutritional support.Methods: Using the [hospital’s] database, records from 77 patients consulted consecutively in the MND clinic were obtained. Service parameters were compared against reference standards for diagnostic delay and treatment provision.Results: 84.4% of referrals came from neurologists outside of the MND service, with only 13% from general practitioners. On average, it took 14.7 months for patients to be seen in the MND clinic following symptom onset. Riluzole and percutaneous endoscopic gastrostomy (PEG) were prescribed faster in bulbar-onset versus limb-onset patients, by 4 times and 9 times respectively. End-of-life care discussion was recorded for 26% of patients.Conclusion: Diagnosing MND remains challenging for primary care physicians, which may be alleviated by disseminating recent Red Flag Committee guidelines. Investigation and treatment provision differed between MND subtypes, given the poorer prognosis associated with bulbar-onset. End-of-life care documentation remains low, which is an issue for the multi-disciplinary team (MDT) to resolve through incorporating palliative services.

BackgroundTwo hospices provide separate support across the same county, for individuals and their loved ones affected by Motor Neurone Disease (MND). To achieve equal access to regular collaborative holistic assessments...

Acceptance and Commitment Therapy plus usual care for improving quality of life in people with motor neuron disease (COMMEND): a multicentre, parallel, randomised controlled trial in the UK

Background There are increasing opportunities for individuals with Motor Neurone Disease (MND) and their carers to seek information and share knowledge, experiences and emotions online. Although studies have examined the use of web forums within healthcare and some attention has been paid to information exchange and provision of advice, few studies have focused on the processes of sharing of information and experiences. The role of trust and empathy in mediating illness-based online sharing is also under-researched. This poster will report work in progress from a research project that is examining information posted to the MND Association online forum. The study is part of a large-scale project entitled 'A Shared Space and a Space for Sharing' which is investigating how people in extreme circumstances share information online and how acts of sharing impact on the development of trust and empathy. Objectives This project will investigate the processes (e.g., emotional, practical, relational) involved in sharing in the MND Association forum, and will establish what the potential benefits are, if any, of developing trusting and empathic relationships in online environments for those living with MND. Findings The poster will report on initial themes emerging from the analysis. Outcomes The findings will provide understanding about how trust and empathy can be facilitated in online environments. They will also highlight factors that contribute to under-sharing, poor sharing and loss of trust between individuals interacting in online spaces. This will be of interest and practical use for charitable and health organisations (including the MND Association) seeking to explore innovative ways of using, designing and facilitating digital environments to deliver and/or enhance support services. Acknowledgements Thanks to the MND Association for their support with this work. This project is part of the 'A Shared Space and a Space for Sharing', funded through the following cross-council programmes: Partnership for Conflict, Crime and Security Research (lead: Economic and Social Research Council (ESRC)), Connected Communities (lead: Arts &amp; Humanities Research Council (AHRC)), Digital Economy (lead: Engineering and Physical Sciences Research Council (EPSRC)) in partnership with: Defence Science and Technology Laboratory (Dstl), Centre for the Protection of National Infrastructure (CPNI)

<h3>Objective</h3> There is an immense socioeconomic burden for both the patients with motor neuron disease (MND) and their families. The aim of this study is to evaluate the extent to which the provision offered by the Motor Neurone Disease Association is distributed among patients with MND living in the ethnically and socially diverse area of Greater London, according to the patients’ socioeconomic situation and needs. <h3>Setting</h3> Greater London, where age and sex-adjusted prevalence rates of MND in 2016 were calculated. <h3>Participants</h3> Prevalent MND cases in Greater London, using anonymised data extracted from the Association’s database. <h3>Exposure</h3> Demographic and socioeconomic characteristics <h3>Primary and secondary outcome measures</h3> Receiving a Motor Neurone Disease Association grant, and the amount of money received. <h3>Results</h3> 396 individuals with amyotrophic lateral sclerosis were detected, the age-specific and sex-specific prevalence of MND was 4.02 per 100 000 inhabitants, higher among men (5.13 per 100 000) than women (3.01 per 100 000). Men were statistically significantly 40% less likely to receive a grant compared with women; among grant recipients, the younger the age of the participant, the higher the size of the grant received. The Index of Multiple Deprivation was not associated with either receiving a grant nor the amount of money received, among recipients. <h3>Conclusion</h3> Financial support by the Motor Neurone Disease Association is provided across individuals and across boroughs regardless of their socioeconomic circumstances. Differences that benefits women and younger patients were detected.

Introduction: Motor neurone disease is a life limiting progressive neurological condition that requires a team-based approach to care. Person-centred care (PCC), integrated care and access to specialised motor neurone disease (MND) multidisciplinary clinics (MDC) are optimal approaches to the delivery of quality service for people living with MND (plwMND) for improved quality of life, health outcomes and care experiences. These MND MDCs models of care vary in design, implementation, and are predominantly specialist hospital based. Therefore, not all MND services are delivered consistently highlighting a need to explore the evidence on current practices that contribute to more effective, efficient person-centred integrated care practices across the continuum. Aim: This rapid review explores best practices of integrated care for people living with motor neurone disease, and their families and carers. Methods: A search was undertaken of six databases, Medline (Ovid), Embase (Ovid), CINAHL, Cochrane, Joanna Briggs Institute and Google Scholar. The 1469 retrieved abstracts were screened for eligibility against the inclusion criteria, and full text review was conducted on 149 studies. Data were extracted from 58 studies and a quality assessment conducted on final 45 included studies. The following information was gathered from the included studies to inform the review. 1.What is ‘best practice’ in the management/care of plwMND 2.What models of (integrated) care have been developed to support plwMND 3.What are the common elements of integrated care approaches that have been implemented in MND? 4.What impacts, outcomes, or effects of integrated care approaches have been reported for plwMND? Results: The initial review analysis indicated specialised MND multidisciplinary clinics (MDC) as ‘best practice’ in the optimal management of MND, but revealed no standardised approaches in design and implementation, the multidisciplinary workforce, and degree of integration and partnerships between hospitals and the community. MND MDC are predominantly hospital based, but the inclusion of either outreach community teams, hub and spoke approaches, and/or a hybrid design, (care delivered in person and /or by telehealth), improved integration, knowledge sharing and coordination across services. The timing of introduction and delivery of palliative care services differs but there is greater focus on integration into MND MDC, or earlier referrals to dedicated palliative care service and/or specific palliative care training of neurologist/multidisciplinary team, to optimise symptom management, decision-making and end of life care. Additional features that enable integration, improve care satisfaction and equity are one or a mix of 1) telehealth, 2) care coordination, 3) case management, 4) partnerships with MND associations, and/or 5) MND helpline. Conclusion: This review highlights a range of practices of integrated care that are not universal and predominantly practiced in high income countries. Adapting delivery of model of care to stage and duration of MND, and differing expectations, needs and priorities of plwMND and caregivers, is a common theme throughout. There has been greater uptake in telehealth and technology to support the equitable delivery of integrated approaches to care, with rapid development in this area during COVID 19 pandemic.

British Journal of Neuroscience NursingVol. 12, No. 1 BriefingCognition and motor neurone disease: the factsJackie HillJackie HillSearch for more papers by this authorJackie HillPublished Online:26 Feb 2016https://doi.org/10.12968/bjnn.2016.12.1.38AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Abrahams S, Leigh PN, Goldstein LH (2005). Cognitive change in ALS: a prospective study. Neurology 64(7): 1222–26 Crossref, Google ScholarAbrahams S, Newton J, Niven E et al. (2014) Screening for cognition and behaviour changes in ALS. Amyotroph Lateral Scler Frontotemporal Degener 15(1–2): 9–14 Crossref, Google ScholarBäumer D, Talbot K, Turner MR (2014) Advances in motor neurone disease. J R Soc Med 107(1): 14–21 Crossref, Google ScholarChiò A, Ilardi A, Cammarosano S et al. (2012) Neurobehavioral dysfunction in ALS has a negative effect on outcome and use of PEG and NIV. Neurology 78(14): 108–9 Crossref, Google ScholarElamin M, Phukan J, Bede P et al. (2011) Executive dysfunction is a negative prognostic indicator in patients with ALS without dementia. Neurology 76(14): 1263–9 Crossref, Google ScholarGibbons ZC, Richardson A, Neary D et al. (2008) Behaviour in amyotrophic lateral sclerosis. Amyotrop Lateral Scler 9(2): 67–74 Crossref, Google ScholarGirardi A, MacPherson SE, Abrahams S (2011) Deficits in emotional and social cognition in amyotrophic lateral sclerosis. Neuropsychology 25(1): 53–65 Crossref, Google ScholarGoldstein LH, Abrahams S (2013) Changes in cognition and behavioural in amyotrophic lateral sclerosis: nature of impairment and implications of assessment. Lancet Neurol 12(4): 368–80 Crossref, Google ScholarHogden A, Greenfield D, Nugus P et al. (2013) What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence 7: 171–81 Crossref, Google ScholarLillo P, Hodges JR (2009) Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders. J Clin Neurosci 16(9): 113–5 Crossref, Google ScholarLillo P, Mioshi E, Hodges JR (2012) Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioural changes than physical disability: a comparative study. BMC Neurol 12: 156 Crossref, Google ScholarLomen-Hoerth MD, Murphy J, Langmore S et al. (2003) Are amyotrophic lateral sclerosis patients cognitively normal? Neurology 60(7): 1094–7 Crossref, Google ScholarMerrilees J, Klapper J, Murphy J et al. (2010) Cognitive and behavioural challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotroph Lateral Scler 11(3): 298–302 Crossref, Google ScholarMioshi E, Bristow M, Cook R et al. (2009) Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord 27(1): 76–81 Crossref, Google ScholarMioshi E, Caga J, Lillo P et al. (2014) Neuropsychiatric changes precede classic motor symptoms in ALS and do not affect survival. Neurology 82(2): 149–155 Crossref, Google ScholarMotor Neurone Disease (MND) Association (2015) For professionals. http://tinyurl.com/zq3ak8x (accessed 29 January 2016) Google ScholarMurphy JM, Henry RG, Langmore S (2007) Continuum of frontal lobe impairment in amyotrophic lateral sclerosis. Arch Neurol 64(4): 530–4 Crossref, Google ScholarNational Clinical Guideline Centre (2015) Motor neurone disease: assessment and management. http://tinyurl.com/j9uqqdq (accessed 29 January 2016) Google ScholarNewsom-Davis IC, Lyall RA, Leigh PN, Moxham J, Goldstein LH (2001). The effect of non-invasive positive pressure ventilation (NIPPV) on cognitive function in amyotrophic lateral sclerosis (ALS): a prospective study. J Neurol Neurosurg Psychiatry 71(4): 482–7 Crossref, Google ScholarPijnenburg Y (2011) New diagnostic criteria for the behavioral variant of frontotemporal dementia. Eur Neurol Rev 6(4): 234–7 Crossref, Google ScholarStrong MJ, Grace GM, Freedman M et al. (2009) Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis. Amyotroph Lateral Scer 10(3): 131–46 Crossref, Google ScholarZago S, Poletti B, Morelli C et al. (2011) Amyotrophic lateral sclerosis and frontotemporal dementia (ALS-FTD). Arch Ital Biol 149(1): 39–56 Google Scholar FiguresReferencesRelatedDetailsCited byCommunication and cognitive impairments and health care decision making in MND: A narrative review8 July 2019 | Journal of Evaluation in Clinical Practice, Vol. 25, No. 6The challenges of dysphagia in treating motor neurone diseaseSiobhan Vesey7 July 2017 | British Journal of Community Nursing, Vol. 22, No. Sup7 2 February 2016Volume 12Issue 1ISSN (print): 1747-0307ISSN (online): 2052-2800 Metrics History Published online 26 February 2016 Published in print 2 February 2016 Information© MA Healthcare LimitedPDF download

Reversing the hub and spoke model: patient experiences of the development of a community based multi disciplinary motor neurone disease (MND) clinic to meet the motor neurone disease association's standards of care

Few disorders are as devastating as motor neurone disease (MND). Imagine a healthy and alert mind trapped inside a body that cannot move: that's the reality of MND. Mel Barry, Communications Manager at the MND Association, discusses how the association is helping to support and improve the lives of people affected by the illness. Copyright © 2009 Wiley Interface Ltd