scholarly journals Mindsong, music therapy and dementia care: collaborative working to support people with dementia and family carers at home

2019 ◽  
Vol 33 (1) ◽  
pp. 16-26 ◽  
Author(s):  
Ruth Melhuish ◽  
Maggie Grady ◽  
Anthea Holland
Keyword(s):  
Music Therapy ◽  
Care Home ◽  
Well Being ◽  
Positive Outcomes ◽  
Challenging Behaviour ◽  
Advanced Dementia ◽  
Family Carers ◽  
Specialist Care ◽  
People With Dementia ◽  
Collaborative Working

Mindsong brings music therapy to people with dementia across Gloucestershire. In 2016, it was part of an innovative co-production project funded by NHS Gloucestershire Clinical Commissioning Group that offered music therapy to people with advanced dementia and ‘challenging’ behaviour. Music therapy was used at times of crisis with couples in the domiciliary setting and the hardest to reach residents at a dementia specialist care home. Positive outcomes included improvements in well-being, mood, engagement and behaviours. Working with client and carer together resulted in increased carer resilience despite complex challenges. Collaborative working maximised results to the benefit of clients and those who care for them. This article focuses on work in the domiciliary setting.

scholarly journals Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

BMJ Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. e033046
Author(s):  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
Nicola Kendall ◽  
Joanne Atkinson ◽  
Sharron Tolman
Keyword(s):  
Care Home ◽  
Care Program ◽  
Holistic Approach ◽  
Positive Outcomes ◽  
Family Carers ◽  
Home Setting ◽  
North East ◽  
The North ◽  
People With Dementia ◽  
Person With Dementia

IntroductionThe End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a ‘shell’; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people’s own homes.ObjectiveTo develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.DesignA qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.SettingA hospice in the North East of England, operating in the community, through volunteers.ParticipantsProgramme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).ResultsFour refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.ConclusionsNamaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

scholarly journals 409 - Trends in Involvement, Perceived Role, Role Overload and Self-efficacy of Family Carers of People with Dementia in Care Homes

2020 ◽  
Vol 32 (S1) ◽  
pp. 125-125
Author(s):  
Marleen Prins ◽  
Bernadette Willemse ◽  
Marlous Tuithof ◽  
Henriëtte van der Roest ◽  
Anne Margriet Pot
Keyword(s):  
Self Efficacy ◽  
Care Home ◽  
Care Homes ◽  
Role Overload ◽  
Family Carers ◽  
Change Over Time ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care ◽  
Over Time

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.

scholarly journals Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial

2019 ◽  
Vol 216 (1) ◽  
pp. 35-42 ◽  
Author(s):  
Gill Livingston ◽  
Monica Manela ◽  
Aidan O'Keeffe ◽  
Penny Rapaport ◽  
Claudia Cooper ◽  
...  
Keyword(s):  
Health Research ◽  
Psychological Intervention ◽  
Care Home ◽  
Clinical Effectiveness ◽  
Cost Of Care ◽  
Research Centre ◽  
Family Carers ◽  
People With Dementia ◽  
The Impact

BackgroundThe START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.AimsTo assess the clinical effectiveness over 6 years and the impact on costs and care home admission.MethodWe conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.ResultsIn total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).ConclusionsSTART is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.Declarations of interestG.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

scholarly journals An evaluation of group reminiscence arts sessions for people with dementia living in care homes

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 805-821 ◽  
Author(s):  
Frank Keating ◽  
Laura Cole ◽  
Robert Grant
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Care Home ◽  
Well Being ◽  
Care Homes ◽  
Primary Data ◽  
Evaluation Team ◽  
People With Dementia ◽  
Group Reminiscence

Dementia has been identified as one of the major challenges in the 21st Century. The detrimental effects of dementia can jeopardise personhood, thus person-centred interventions including reminiscence and arts practice have been recommended as tools to promote social inclusion and improve the quality of life. This study aimed to evaluate the effectiveness of group reminiscence arts sessions for people living with dementia in care homes (residential and nursing homes) using a comparative and time series design to collect data on quality of life. The intervention was conducted in six care homes in London over a period of 24 weeks and compared with six care homes not receiving the intervention (control). Dementia Care Mapping was used as the primary data collection instrument to measure positive behaviours and rate quality of life before, during and after group reminiscence arts sessions. The evaluation team observed the sessions at three-weekly intervals. Statistical modelling found that positive behaviours and quality of life of care home residents participating in group reminiscence arts sessions increased over the 24-week period. Well-being increased sharply during each session and plateaued at 50 minutes with a sustained positive effect after the sessions. On a longer timescale, well-being and quality of life increased slowly and steadily from one session to the next. The findings were statistically significant ( p < 0.001). The study concludes that group reminiscence arts sessions can have a positive and sustained impact on the quality of life of people with dementia. However, the evidence on the sustainability of the effect over time remains unknown. More research is needed to assess in much greater depth the association between quality of life and group reminiscence arts sessions.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

scholarly journals Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

2020 ◽  
Vol 28 (4) ◽  
pp. 337-348
Author(s):  
Louise Ritchie ◽  
Anna Jack-Waugh ◽  
Elsa Sanatombi Devi ◽  
Binil V ◽  
Anice George ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Local Community ◽  
Well Being ◽  
Family Carer ◽  
Advanced Dementia ◽  
Family Carers ◽  
Care Needs ◽  
Content Type ◽  
Practitioner Education

PurposeMany individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.Design/methodology/approachThree focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.FindingsThe findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.Research limitations/implicationsThere is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.Practical implicationsThe findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.Originality/valueThis paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

Strategies for Recruiting People With Dementia to Music Therapy Studies: Systematic Review

2021 ◽  
Author(s):  
Felicity A Baker ◽  
Jonathan Pool ◽  
Kjersti Johansson ◽  
Thomas Wosch ◽  
Anna A Bukowska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Music Therapy ◽  
Small Sample ◽  
Residential Aged Care ◽  
Recruitment Strategies ◽  
Family Carers ◽  
Community Based ◽  
Positive Effects ◽  
People With Dementia ◽  
Conversion Rates

Abstract Positive effects of music therapy for people with dementia and their family carers are reported in a growing number of studies. However, small sample sizes or low recruitment rates often limit the success of these research studies. More adequately powered evidence-based studies are needed to impact policy and funding in dementia care. This systematic review examined recruitment strategies in music therapy clinical trials involving people living with dementia and/or their family carers. Eligible studies described enrolment, consent, accrual, or recruitment methods as well as recruitment or consent rates. Thirty studies with a total of 1,192 participants were included. Recruitment and conversion rates in residential aged care facilities (RACFs) (14 studies) were substantially higher than in community-based studies (16 studies). Whereas studies in RACFs most commonly recruited participants through staff approaching residents face-to-face or conversing with residents’ legal guardians, community-based studies utilized a vast array of strategies, including staff referral, demonstrations/information sessions by researchers, advertisements, and direct contact with residents. Recruitment rates are likely to be higher when recruiters have an existing relationship with potential participants and when an independent third-party dementia organization is involved. Randomized controlled trials led to equally or greater recruitment conversion rates than other designs. Findings suggest that recruitment in dementia trials is complex, challenging, and needs thorough planning and consideration to be time- and cost-effective. Future studies should include reporting of recruitment strategies, enrolment rates, and related aspects so that researchers can better design recruitment strategies and estimate resources needed to reach the target sample size.

scholarly journals A qualitative analysis of trainer/coach experiences of changing care home practice in the Well-being and Health in Dementia randomised control trial

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 237-252 ◽  
Author(s):  
Jane Fossey ◽  
Lucy Garrod ◽  
Azucena Guzman ◽  
Ingelin Testad
Keyword(s):  
Care Home ◽  
Well Being ◽  
Relationship Building ◽  
Randomised Control Trial ◽  
Main Theme ◽  
Training Methods ◽  
Care Home Staff ◽  
People With Dementia ◽  
Health And Social Care

Objectives This study explored the experiences of a range of health and social care professionals employed in the role of trainer/coaches to support care home staff to implement a psychosocial intervention for residents living with dementia. It aimed to identify the factors which are pertinent to these roles, in the context of a cascade model of training. Method A focus group was convened involving dementia trainer/coaches and supervisors who had worked on Well-being and Health for people with Dementia randomised control trial. Twelve participants explored their preparedness for and experiences of their role as ‘Well-being and Health for people with Dementia therapists’. They reflected on their perceptions of the resources and support required. The data were transcribed verbatim and subjected to inductive thematic analysis. Results Three main themes emerged from the data. Within the theme of ‘skills in relationship building’ were two subthemes of developing trust and getting to know individual staff and each care home. In the second main theme of ‘making use of tangible resources’ two subthemes relating to using the Well-being and Health for people with Dementia manuals and the supervision of the therapists arose. The third theme, ‘being an agent for change’ contained three subthemes: effective training methods, creating opportunities for Dementia Champions to reflect and therapists' perceived rewards of their role. Conclusion The findings provide new insights into the trainer/coach role applicable to the practices of services recruiting, training and providing ongoing professional support to practitioners in-reaching into care homes.

End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners

2012 ◽  
Vol 2 (Suppl 1) ◽  
pp. A23.1-A23 ◽  
Author(s):  
Caroline Nicholson ◽  
Claire Goodman ◽  
Elspeth Mathie ◽  
Sarah Amador ◽  
Natasha Baron ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Life Care ◽  
Care Home Staff ◽  
People With Dementia ◽  
Collaborative Working

An analysis of carer burden among family carers of people with and without dementia in Ireland

2020 ◽  
pp. 1-12
Author(s):  
Áine Teahan ◽  
Attracta Lafferty ◽  
John Cullinan ◽  
Gerard Fealy ◽  
Eamon O’Shea
Keyword(s):  
Older People ◽  
Well Being ◽  
Self Report ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Dementia Diagnosis ◽  
Carer Burden ◽  
People With Dementia ◽  
Original Dataset

ABSTRACT Objective: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Design: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. Setting: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. Participants: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Measurements: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. Results: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Conclusion: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

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