Humming as a mean of communicating during meal time situations : A Single Case study involving a women with severe dementia and her caregiver

Objective: ‘Music Therapeutic Caregiving’, when caregivers sing for or together with persons with dementia during morning care situations, has been shown to increase verbal and nonverbal communication between persons with dementia and their caregivers, as well as enhance positive and decrease negative emotions in persons with dementia. No studies about singing during mealtimes have been conducted, and this pilot project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. The aim of this pilot project was threefold: to describe expressed emotions in a woman with severe dementia, and describe communication between her and her caregivers without and with the caregiver humming. The aim was also to measure food and liquid intake without and with humming. Method: The study was constructed as a Single Case ABA design in which the ordinary mealtime constituted a baseline which comprised a woman with severe dementia being fed by her caregivers in the usual way. The intervention included the same woman being fed by the same caregiver who hummed while feeding her. Data comprised video observations that were collected once per week over 5 consecutive weeks. The Verbal and Nonverbal Interaction Scale and Observed Emotion Rating Scale were used to analyze the recorded interactions. Results: A slightly positive influence of communication was shown for the woman with dementia, as well as for the caregiver. Further, the women with dementia showed a slight increase in expressions of positive emotions, and she ate more during the intervention. Conclusion: Based on this pilot study no general conclusions can be drawn. It can be concluded, however, that humming while feeding persons with dementia might slightly enhance communication, and positive expressed emotions in persons with dementia. To confirm this, more studies on group levels are needed. Because previous studies have found that caregiver singing during caring situations influences persons with dementia positively it might be desirable to test the same during mealtime.

Anhörigas upplevelser i samband med vård av en äldre person i hemmet : En litteraturöversikt

SAMMANFATTNINGSyftet: Syftet med denna systematiska litteraturstudie var att studera hur anhöriga till äldre personer upplevde sin situation i i samband med att de vårdade sina äldre hemma, hur de hanterade sin situation, samt vilka strategier de använde sig av för att hantera sin roll som anhörigvårdare. Metod: Databaserna Cinahl och Medline användes i sökningarna efter relevanta artiklar. Sökord som användes var relative and older people and home care, home health care and family caregiver elderly people, family caregivers and care givers of aging people, elderly people and family care givers of aging people, family care givers of older people, family caregivers and frail elderly, family caregiver and older people and home care, home care older people and family caregivers older people, family caregivers older people. Efter genomläsning bedömdes 16 artiklar vara användbara i resultatet. Dessa kom från vetenskapliga tidskrifter och artiklarna innehöll både kvalitativa studier som kvantitativa studier. Resultat: De flesta anhörigvårdare var kvinnor, de kunde uppleva en högre belastning än män. De anhöriga påverkades både mentalt, fysiskt och emotionellt. De kände sig bundna men kunde även känna ett välbefinnande i vården av den äldre personen. Anhöriga upplevde sin roll som anhörigvårdare till äldre personer i hemmen som att de var delaktiga i omsorgen genom praktiskt som känslomässigt stöd. Deras situation hade även inverkan på deras upplevelse av stress och hur de hanterade situationen. En del äldre anhörigvårdare var själva äldre och i behov av hjälp. Konsekvenserna av deras reaktioner/upplevelser beskrevs som både subjektiv och objektiv belastning. Samt att de även var mindre benägna att söka stöd i form av avlastning för sina äldre personer. Slutsats: Rollen som anhörigvårdare till äldre personer som vårdas i hemmen innebar förändringar i anhörigas livssituation, de fick ta ett stort ansvar för den äldre personen. De upplevde stora påfrestningar både känslomässigt som praktiskt, många kände sig ensamma utan stöd, andra hade olika sätt att hantera sin situation. Äldre anhörigvårdare var mer utsatta för belastning av olika skäl när de vårdade äldre personer i hemmet, dels var de själva äldre samt att de själva kunde vara i behov av hjälp för sina hälsoproblem. Kvinnorna var den grupp anhörigvårdare som upplevde störst belastning i vården av äldre personer i hemmet. När det gällde att söka hjälp och stöd såg det olika ut bland anhörigvårdarna, trots att kvinnorna upplevde störst belastning var de minst benägna att söka hjälp.

Att vara anhörigvårdare till en lungcancersjuk patient

Syftet med denna systematiska litteraturstudie är att undersöka upplevelser hos anhörigvårdare till lungcancerpatienter. Artikelsökningar har skett i Cinahl och Pubmed. Tiden för anhörigvårdaren kan se olika ut, kort och intensiv eller lång och utmattande. Upplevelser så som skräck är vanligt förekommande direkt efter lungcancerdiagnosen både för patient och vårdare. Detta för att de anhöriga ställs inför ett klart hot om en kommande förlust samt skrämmande tankar kring döden. Hälsan försämras för anhörigvårdaren under vårdtiden och vissa drabbas av depression. De social relationerna försämras, vissa upphör helt då anhörigvårdaren får en känsla av att de alltid måste vara tillgängliga för den sjuke. Vårdbördan kan vara tung och emotionellt stöd kan vara nödvändigt. Trots det väljer många att inte ta emot eller söka något stöd.Inte bara hälsan förändras under sjukdomstiden utan också mycket annat, den som tidigare haft en passiv roll i hushållet kan bli tvungen att ta en mer aktiv roll i skötseln av hem och ekonomi. Trots att anhörigvårdare ofta känner sig utanför och övergivna väljer de att inte uttrycka sina känslor när de blir tillfrågade eftersom det finns en rädsla att ta fokus från patienten.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Usual clinical practice for early supported discharge after stroke with continued rehabilitation at home : an observational comparative study

Introduction: Based on randomised controlled trials, evidence exists that early supported discharge (ESD) from the hospital with continued rehabilitation at home has beneficial effects after stroke; however, the effects of ESD service in regular clinical practice have not been investigated. The purpose of the current study was to compare ESD service with conventional rehabilitation in terms of patient outcomes, caregiver burden at 3 and 12 months and the use and costs of healthcare during the first year after stroke. Material and methods: This study was a subgroup analysis of a longitudinal observational study of patients who received care in the stroke unit at Karolinska University Hospital in Sweden. Patients who met the inclusion criteria for ESD in previous experimental studies were included. The patients were referred to available rehabilitation services at discharge, and comparisons between those who received ESD service (the ESD group, n = 40) and those who received conventional rehabilitation (the NoESD group, n = 110) were performed with regard to independence in activities of daily living (ADL), the frequency of social activities, life satisfaction, and caregiver burden and the use and costs of healthcare during the first year after stroke. Results: At 3 and 12 months, no differences were observed with regard to patient outcomes; however, ESD was associated with a lower caregiver burden (p = 0.01) at 12 months. The initial length of stay (LOS) at the hospital was 8 days for the ESD group and 15 days for the NoESD group (p = 0.02). The median number of outpatient rehabilitation contacts was 20.5 for the ESD group (81% constituting ESD service) and 3 for the NoESD group (p<0.001). There was no difference between the groups with regard to overall healthcare costs. Conclusions: ESD service in usual clinical practice renders similar health benefits as conventional rehabilitation but a different pattern of resource use and with released capacity in acute stroke care.

Can humming caregivers´ facilitate feeding during mealtime situations with persons with dementia? A qualitative study

Background. ‘Music Therapeutic Caregiving’, defined as when caregivers’ sing for or together with persons with dementia care situations, has been shown to facilitate the caring situation, and enhance positive and decrease negative expressions in persons with dementia. No studies about singing during mealtimes have been conducted, and this project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. Aim. To describe professional caregivers’ experiences of humming during meal time while feeding persons with dementia. Method. An intervention with caregivers humming was implemented during lunch time. Focus group interviews were conducted to fetch the caregivers experiences. Qualitative content analysis was used to analyse the interviews. Results. The caregivers described that humming disseminated relaxation and joy, and awakened memories about the songs hummed which encouraged the persons with the dementia to join in the songs. They also described that humming seemed to make the persons with dementia associate with mealtime and could make them eat more. However it also revealed suspiciousness and agitation from the persons with dementia. Conclusion. Humming during mealtime revealed mainly positive as well as some negative influences. More and larger studies are needed to be able to draw general conclusions.

Reactions of Persons with Dementia to Caregivers Singing in Morning Care Situations

Music therapeutic caregiving', when caregivers sing for or together with persons with severe dementia during care situations, has been suggested as a way to reduce problematic behaviors in dementia care. The present study implemented this technique as an intervention in dementia care. Six caregivers participated in group interviews about their experiences of morning care situations without and with'Music therapeutic caregiving'. Through a qualitative content analysis two themes emerged.'Being in a different reality' was based on'usual' morning care situations. The caregivers' experienced the persons with dementia as absent-minded; communication and cooperation were difficult. The second theme,'Being present', was based on morning care situations with the intervention. The caregivers described communication as enhanced; the persons with dementia expressed themselves more appropriately, making cooperation possible. The results indicate that'Music therapeutic caregiving' might lead to a more positive experience of the person with dementia and seems to increase receptivity to caregiving.  

Effekter av icke-farmakologiska metoder vid beteendemässiga och psykiska symtom hos personer som lever med Alzheimers sjukdom : En litteraturöversikt

Bakgrund: Alzheimers sjukdom (AD) är den vanligaste formen av demenssjukdomar och antalet människor som insjuknar i AD förväntas öka kraftigt med tiden. Dessutom kännetecknas personer med AD ofta av beteendemässiga och psykiska symtom (BPSD) som kan innefatta agitation, depression, vanföreställningar, oro, ångest, hallucinationer, sömnrubbningar, rastlöshet och apati. Dessa symtom kan orsaka lidande hos patienten och är svåra att hantera för både vårdgivaren och anhöriga, samt försvårar omvårdnadsarbetet. Syftet var att beskriva icke-farmakologiska metoder och effekter av dessa metoder vid omvårdnad av personer med Alzheimers sjukdom som har beteendemässiga och psykiska symtom. Metod: En litteraturöversikt bestående av 16 utvalda kvantitativa forskningsartiklar har genomförts. Artiklarna publicerades mellan år 2006-2016. Resultat. De studerade icke-farmakologiska metoderna var musikterapi, vissa typer av massage, reminiscence-terapi, vårdhundterapi och ljusterapi. Resultaten visade att icke-farmakologiska metoder kan ha en varierande effekt på BPSD. Litteraturöversikten visade att musikintervention var mest effektiv för att minska agitationsbeteende. Individualiserad musik i samband med speciella minnen minskade stress, fobier hos personer med svår demens. Intervention av handmassage, aromaterapi, taktil massage och terapeutisk beröring minskade aggression och agitationsbeteende. Vissa studier visade dock att fotmassageintervention och vårdhundterapi kunde öka verbal aggressivitet hos personer med demens, medan en annan studie visade att djurassisterade aktiviteter kunde minska nedstämdhet medan glädje och generell uppmärksamhet ökade. Effekten av ljusbehandling var förbättrad sömn, minskad depression, agitation och ätstörningar. Slutsats. Icke-farmakologiska metoder kan minska beteendemässiga och psykiska symtom hos personer med Alzheimers sjukdom, dock med varierande effekt. De varierande resultaten kan tolkas som att icke-farmakologiska metoder bör individanpassas och att det behövs vidare forskning inom området.

Att leva nära den palliativa vården, ur de närståendes perspektiv – en litteraturöversikt

Bakgrund: Idag lever många nära en person som drabbats av en livshotande sjukdom. Många som insjuknar har behov av den palliativa vården. Den palliativa vården syftar till att främja livskvalitet och lindra lidande, både för patienten och för de närstående. När en person i familjen blir sjuk är det naturligt för de flesta människor att ta rollen som vårdare och familjen anses ha en stor betydelse i vården av den sjuke. Att erhålla information samt stöd är viktiga förutsättningar för att de närstående ska kunna känna delaktighet i vården. Sjuksköterskan har till uppgift att lindra lidande, främja hälsa samt ge stöd och information. Syfte: Att belysa de närståendes erfarenheter av den palliativa vården. Design: En litteraturöversikt. Metod: 14 vetenskapliga artiklar som blivit publicerade under de senaste fem åren, har lästs flertalet gånger och därefter analyserats utifrån en innehållsanalys, för att finna gemensamma kategorier som beskriver de närståendes erfarenheter/ upplevelser. Resultat: Närheten till döden var något som väckte starka känslor, och situationen beskrevs vara fysiskt, psykiskt och emotionellt påfrestande. Resultatet visar att de närstående tog ett stort ansvar i vården av den sjuke, detta resulterade i ett ökat behov av stöd, framförallt från familj och vänner. En god relation till vårdpersonalen ökade förutsättningarna till en god vård. Trots den svåra situationen kunde meningsfullhet upplevas. Slutsats: Sjukdomen medförde att livssituationen förändrades och en ökad ansvarskänsla uppstod hos den närstående. Stöd från familj och vänner, samt vårdpersonal hade stor betydelse. Kunskap hos vårdpersonalen värderades högt och det var viktigt att den sjuke skulle få dö en värdig och fridfull död.

Carers in the welfare state : on informal care and support for carers in Sweden

  The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I). Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II). The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II). The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84. In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government’s special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III). Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government’s special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV). In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm. In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.