Alzheimer disease (AD) and related dementias affect nearly one in thirteen Canadians over the age of 65. Difficulties in communicating are frequently cited as the greatest source of stress for individuals who have a diagnosis of dementia and their families. Despite the wide recognition that the family is affected by a relative’s diagnosis of dementia, there has been little research aimed at understanding the experience of the family as a unit. The purpose of this study is to gain insight into the family experience of communicating with a relative who has dementia. This study used a qualitative single case study design, drawing on the theory of Symbolic Interactionism. Three members of one family participated in two individual interviews and a family interview. The family member who was experiencing symptoms associated with AD but whose diagnosis was referred to as “cognitive impairment” (CI), participated in one individual interview. Interviews were transcribed and the data was analyzed using constant comparative analysis. The findings that emerged from the data indicate that the participating family approached communication with the intention of achieving three particular goals in their interactions. These goals were to include, protect, and bring happiness to their afflicted family member. Three strategies were identified as the primary strategies used to achieve these goals: interpreting, scripting, and translating. Further, the family was organized in such a way that members were positioned either as part of the ‘core’ of the family or on the ‘outskirts’ of the family. Family members that pursued and achieved the three goals in their interactions with the relative who has CI were considered to be part of the core while others who were not willing or capable of interacting in this way were positioned on the outskirts of the family. Understanding the communication experience of the family as a unit offers a vital link to meet the needs of families dealing with the effects of CI. This knowledge will aid in formulating important new questions and insights for researchers and clinicians to provide the care and support necessary to promote the well-being of families affected by CI.

No description available.

No description available.

Caregiving for two parents affected by chronic dementia was the original impetus for this study. My negative experiences led to a quest for insight and solutions through volunteer, professional and academic pursuits. It culminated in this exploration of caregivers' experiences and their decision-making to expose the educational support they need. Caregivers tend to be family members, and overwhelmingly women. Studies from various disciplines confirm that caregivers need educational support to make decisions. Yet, little is known about what type of educational support they need and how it is to be provided. Caregivers' voices are seldom included in research and they are frequently blamed for the problems they confront. This qualitative study honours caregivers' voices. Through in-depth semi-structured interviews, the perspectives of five women form my primary source of data. Personal documentation, archival materials, and interviews with experts in the field supplement these data. To analyze the data two complementary analytic approaches are used: categorization and contextualization. A categorization approach organizes the data into conceptual themes. These themes include activities of multitasking, being locked into a state of heightened alert, interpreting the disease, and managing care. These activities reveal physical and psychological suffering. Contextualization approaches situate the dilemmas the women face in particular contexts. These dilemmas highlight their lack of authority. The analyses indicate that the women engage in a wide range of decision-making and that they need both similar and specific types of educational support. These types of support include (1) lessening their burdens and their frustrations of decision-making; (2) facilitating ethical decision-making; (3) providing information about medical treatments; and (4) assisting with the access to and with the assessment of suitable resources. Overall, caregiving is a ve

No description available.

Risken att drabbas av demens ökar med stigande ålder. Antalet demenssjuka kommer att öka beroende på att befolkningen blir allt äldre. I och med detta ökar även antalet anhöriga som har en viktig roll i vården av den sjuke. I Sverige finns det ca 1,3 miljoner personer som ger stöd eller vård till närstående regelbundet. Demens är en diagnos för en rad symtom, med bland annat sviktande minne och nedsättning av andra kognitiva funktioner, vilket i sin tur har allvarliga konsekvenser för individer, familjer och hälso- sjukvårdssystem. De vanligaste formerna av demens är Alzheimers sjukdom, vaskulär demens och frontallobsdemens. En demenssjukdom medför ofta en stor fysisk, psykisk och social påfrestning. Syftet med litteraturstudien var att belysa anhörigvårdares upplevelse av att leva med en närstående som drabbats av demens. Studien baseras på nio kvalitativa och två kvantitativa artiklar. Analysen resulterade i tre huvudkategorier: "Upplevelse av förändrad relation", "Upplevelse av förändrad vardag" och "Upplevelse av stödbehov". I resultatet framkom det att anhöriga upplevde en rollförändring vilket påverkade såväl relationer som anhörigas hälsa. Upplevelser av ensamhet, bundenhet och isolering var stor samt känslan av att förlora kontrollen över sitt liv. Resultatet visar även på att anhöriga kan uppleva meningsfullhet i vårdandet. Personen med demens blir ofta allt mer beroende av familjemedlemmars stöd för att klara sin dagliga livsföring. Anhöriga behöver i sin tur stöd för att hantera vardagen och för att öka känslan av trygghet i deras omsorgssituation. En sjuksköterska behöver goda grundläggande kunskaper om den kliniska bilden och symtomatologi av kognitiv nedgång för att kunna ge anhöriga värdefulla råd och information.

This study concerned assessments of attitudes towards demented patients among students and nursing staff as well as attitudes towards active euthanasia, wish to transfer to other jobs, ability of empathy and experience of burnout among nursing staff. The study aimed also to relate experience of burnout to attitudes towards demented patients, ability of empathy and experience of work with demented patients. The study was performed by use of questionnaires, scales measuring attitudes towards demented patients, experience of burnout and ability of empathy. Tape-recorded interviews were also included aiming to explore the staffs experience at work. The results showed that a majority of the students and staff held positive attitudes towards demented patients. A small proportion intended to work solely with demented patients. Staff working in psychogeriatric care and somatic long-term care held more positive attitudes than staff working in acute medical care. Proportions of staff with positive attitudes varied depending on age, duration of employment, education and place of work. A larger proportion of staff in geriatric care than in acute care reported a wish to transfer to another job. LPN’s in nursing homes to the largest proportion stated this wish to transfer. A majority of both students and staff expressed negative attitudes towards active euthanasia to severely demented patients in the finale stage of life. However, most favourable attitudes towards active euthanasia were found among students with shorter health care education and among nurse's aides and LPN’s. The staffs empathy was judged as moderately high and there were no differences found in relation to sex, staff category or place of work. Experience of burnout /tedium varied with the place of work and category of staff. Largest proportions at risk to develop burnout were found among those working in somatic long-term care and psychogeriatric care. RN’s showed lower burnout scores than nurse's aides and LPN’s. Experience of burnout was correlated to attitudes towards demented patients, indicating that the lower burnout score the staff have the more positive are the attitudes. Burnout was also related to the staffs ability of empathy i.e. the lower degree of burnout the higher is the empathie ability. Regression analysis showed that "Experience of feed-back at work” and "Time spent at present place of work" were the most important factors for the staffs experience of burnout. / <p>Diss. (sammanfattning) Umeå : Umeå universitet, 1990, härtill 7 uppsatser.</p> / digitalisering@umu

In 1976 it was proposed that senile dementia, a potential affliction of old age, be redefined as Alzheimer's disease, a rare diagnosis previously assigned to presenile dementia occurring in middle life. In response to a "public culture" generated by those caring for the afflicted, together with leaders of the biomedical reserch community, substantial financing has been allocated by the U.S. Congress to the National Institutes of Health, for investigation of senile dementia redefined as a "dread disease". This has funded studies in the neurosciences, and a range of epidemiological and high technology diagnostic investigations for which psychiatry developed a "case-finding" method. The "cognitive paradigm" for dementia was conceived by American psychiatry within a now dominant "biological" model which imputes physical causation to mental disorders and stresses "objectivity" in diagnosis. This has legitimated the use of "mental test" instruments based upon, or validated against, "intelligence tests" developed by psychologists for quantification of "intelligence" now redefined as "cognition". In a study funded by the National Institute of Mental Health, three cognitive assessment instruments were administered to a sample of individuals aged 60-93 with a broad range of educational experience across the age spectrum. Education rather than age was found to be the most significant predictor of test results for each instrument, and when the tests were repeated a marked "learning effect" was detected among those with the least education and lowest baseline scores. However, the identification of low education as a predictor, albeit less powerful than age for "cognitive impairment" indicative of dementia in other investigations has now been interpreted as a "risk factor" rather than a confounding variable and now enters into genetic mental testing models. Negative stereotyping of "old age", strongly associated with images of "senility", and "burden of ageing" economic arguments have therefore been reinforced by the dissemination of prevalence estimates from epidemiological studies conducted in communities in which there is an inverse correlation between age and education. In the meantime, basic scientists have failed to discriminate precisely between neuropathological changes indicative of "disease" and those of "normal ageing" or to establish a functional link between such changes and dementia behaviour in vivo. In consequence the legitimating rationale for public financing of the "Alzheimer's enterprise", i.e. "clinical benefit" remains elusive.

Demenssjukdomar drabbar mer än 35 miljoner människor världen över, en summa som kommer att fördubblas vart tjugonde år.    Demens är en global störning av intellektuella funktioner: förmågan att minnas försämras, och förmågor som att orientera sig i tid och rum, språklig förmåga, tankeprocesser som att gå från tanke till handling, problemlösande, utföra saker praktiskt och känna igen föremål. Symtomen följs ofta av förändringar i beteende och personlighet, som låg initiativförmåga, irritation, grovt socialt beteende och humörsvängningar. I Sverige diagnostiseras 25 000 personer per år, totalt så lever 160 000 personer med sjukdomen i Sverige idag. I Sverige ställs diagnosen ofta utifrån blodprover, hjärnröntgen och Mini Mental Score Evaluation-Swedish Revision tillsammans med personens sjukdomshistoria.   Efter diagnosen har ofta anhöriga många frågor om hur livet kommer att te sig framöver, är det bra att flytta eller ska man bo kvar? Hur kommer sjukdomen att förändra livet och personligheten hos den drabbade? Tidigare studier visar att dessa frågor ofta förblir obesvarade, det är svårt att få en uppföljning hos läkare och det finns få länder där stöd efter diagnosen är vanligt förekommande.    Sverige har sen 2009 lagstiftat om rätten till stöd till anhöriga och närstående med demenssjukdom eller andra kroniska sjukdomar med funktionshinder. Typen av stöd som ges skiljer sig däremot åt, Socialstyrelsen kom därför hösten 2013 ut med riktlinjer för hur stödet bör se ut för att vara effektivt: 8-10 träffar under 3-6 månader med information och socialt stöd till anhöriga. En kommun i norra delen av Sverige har gett långvarigt stöd till personer med demenssjukdom och deras anhöriga sen 2006. Ett nära samarbete med Landstinget i regionen och på senare tid även privata vårdcentraler i området har lett till att stöd kan erbjudas i direkt samband med diagnostillfället. Personerna deltar ofta i stödgrupp inom ca 4-6 veckor efter sin diagnos. Avhandlingens syfte var att fördjupa kunskapen om personernas upplevelse av att vara i stödgrupp under lång tid; den längsta i 4 år. Intervjuer gjordes med anhöriga och personer med demenssjukdom. Resultaten visade att de par som varit med längst i stödgrupp kände sig trygga, de upplevde att de fick god kunskap om demens och var förberedda på den förändring som skulle komma. Resultaten visade också att vara vuxet barn till en person med demens innebar att vara tyngd av ansvar för att agera i den sjuka förälderns intresse trots en djup känsla av sorg of förlust vilket ofta leder till frustration med situationen. Relationerna inom familjen kan förändras efter demens diagnosen både till det bättre; att man sluter upp kring den demenssjuke föräldern men också till det sämre; att familjen splittras då relationerna utsätts för påfrestningar. Personerna med demenssjukdom som deltog i stödgrupperna upplevde och skattade sin känsla av sammanhang högt; att livet var meningsfullt, begripligt och hanterbart. Deras friska partner upplevde mindre begriplighet och hanterbarhet och de vuxna barnen mer meningsfullhet. Avhandlingens resultat har legat till grund för en modell för stöd till personer med demenssjukdom och deras anhöriga kallat PER-modellen®; Pedagogisk, Emotionell och Relationsbaserad modell för stöd. / Dementia disorders affect more than 35 million people around the world, which will double every twenty years. Dementia is a global disruption of intellectual functioning; there is a decrease of memory ability and other intellectual abilities such as orientation, visuospatial- perceptive ability, language, thinking, executive abilities, problem solving, apraxia and agnosia.  These symptoms are often followed by behavioral changes and changes in the personality, such as loss of initiative, emotional instability, irritation, apathy, coarse social behaviour and mood changes. The most frequent symptoms were apathy, depression, irritability, and agitation. About 25, 000 persons are diagnosed with dementia each year in Sweden. Today, estimates are that 160, 000 persons in total are suffering from dementia in Sweden. In Sweden, most diagnoses are done in the primary health care setting by general practitioners  and are based on the person´s own history, interviews with next of kin and an Mini Mental Score Evaluation- Swedish Revision (MMSE-SR) along with blood work and a brain scan to rule out any other diseases. After diagnosis the next of kin often have many questions about the coming lifestyle changes and ways to handle the personality changes that the person suffering from dementia may go through. Previous studies show that in many cases these questions are left unanswered, because it is difficult to get a follow up with a physician and there are few countries where support after diagnose is common.    In 2009, the Swedish Parliament passed a new law that states that support is to be given to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities. There was, however, no detailed description of the extent or kind of services to be provided, and the municipalities had extensive freedom in implementing the legislation. In the autumn of 2013 the Swedish National Health Board therefore, issued guidelines where eight to ten meetings during a three- to six-month period with information and social support were recommended.A municipality in northern Sweden have a long term ongoing support to persons with dementia and their next of kin since 2006. A close collaboration with the geriatric clinic and private health centers has resulted in support being offered within 4-6 weeks after diagnose.     The overall aim of this thesis was to explore experiences of living with dementia both as a sufferer and as a next of kin; and being part of a long-term ongoing support group, the longest for four years.     Interviews were done with persons with dementia and their next of kin. Results showed that couples who had been the longest in a support group felt great comfort and support. They experienced that their knowledge about the disorder was good and that they could prepare for the changes to come. Results also showed that to be an adult child of a person with dementia disease means being burdened with the responsibility to act on behalf of the diseased parent despite a deep sense of grief and loss, which leads to frustration with the situation.     Relationships within the family can sometimes change when a family member is affected by dementia. Sometimes for the better; where the family rallied to support the affected member and sometimes for worse; where the relationships were strained when pressure became too much. The persons with dementia who participated in the support groups experienced a great sense of coherence and felt that life was manageable, comprehensible and meaningful. Their healthy partners experienced less comprehensibility and manageability and the adult children more meaningfulness.   The results of the thesis have founded a model for support called PER-model®; Pedagogical, Emotional and Relationship based model of support.

Sammanfattning Bakgrund: På grund av att människor lever längre så kommer antal personer med demens också att öka. Med stigande ålder och ökad närvaro av kroniska sjukdomar så som demenssjukdom, blir det även en ökning av undernäringsproblematik hos den äldre befolkningen.   Syftet: Föreliggande litteraturstudies syfte var att beskriva hinder och möjligheter för att sjuksköterskan ska kunna uppmärksamma, förhindra och minimera undernäring hos äldre dementa på äldreboenden. Syftet var också att granska artiklarnas kvalitét utifrån den metodologiska aspekten urval. Metod: En litteraturstudie med deskriptiv ansats genomfördes baserat på 16 vetenskapliga artiklar som söktes i databaserna Pubmed, Chinal och Scopus. Resultat: Studien visar att demenssjukdomens tre stadier orsakar nutritionsproblem. Bristande kommunikation och interaktion, utebliven måltidsträning och biverkningar av vissa läkemedel påverkade dementa äldres nutrition på ett negativt sett. Uteblivna bedömningar och bristande utbildning/kunskap hindrar sjuksköterskan att uppmärksamma undernäringar. Sjuksköterskan kan använda sig av mätinstrument till hjälp för att upptäcka undernäring och de med risk för undernäring. Sjuksköterskan kan ändra i miljön samt sätta in hjälpinsatser så som näringsdrycker, så det ska gynna nutritionen bättre. Måltidsträning har visat sig hjälpa personer med demens att minska sina ätsvårigheter och öka i vikt. Näringskunskapen visade sig vara högre bland dem med högre utbildning. Slutsats: Sjuksköterskor som arbetar på äldreboenden för dementa äldre, har ett ansvar att se till att näringsbehoven blir uppfyllda. Nutritionsvård är ett teamarbete. I en del av sjuksköterskans arbetsområde ingår rollen som ledare, vilket innebär att utbilda och informera övrig vårdpersonal i nutritionsvård. Det finns mycket forskning kring demens och undernäring, men få studier har genomförts utifrån den dementa personens perspektiv. Därför är ytterligare forskning baserat på intervjuer med dementa personer relevant. / Abstract. Background: Because people live longer the number of people with dementia will also increase. With old age and increasing presence of chronic diseases such as dementia, it will also be an increase in the malnutrition problem in the elderly population. Aim: The present study’s aim was to describe the obstacles and opportunities for the nurse to pay attention to, prevent and minimize malnutrition in elderly demented in geriatric care. The aim was also to scrutinize the quality of the articles based on the methodological aspect selection. Method: A literature review with a descriptive approach was conducted based on 16 research articles that were searched in PubMed, Scopus and Chinal. Results: The study shows that the three stages of dementia causes nutritional problems. Lack of communication and interaction in the eating environment, lack of mealtime training and side effects of certain drugs affected the nutrition of people with dementia negatively. Lack of assessments and the lack of education / knowledge hinders the nurse to detect malnutrition. The nurse can use instruments to help to detect malnutrition and those at risk of malnutrition. The nurse may also change in the environment and put into relief efforts such as nutritional beverages, so that it benefits the nutrition better. Mealtime training has been shown to help people with dementia to reduce their eating difficulties and gain weight. Nutritional knowledge was found to be higher among those with higher education Conclusion: Nurses, who work in nursing homes for older people with dementia, have a responsibility to ensure that nutritional needs are met. Nutritional care is a team work. Parts of the nurse’s work include the role of being a leader, which means to educate and inform other healthcare professionals in nutritional care. There is extensive research on dementia and malnutrition, but few studies have been conducted using the demented person's perspective. Therefore, further research based on interviews with people with dementia is relevant.