Yes / Communities play an important role in supporting people living with affected by dementia. The aim of this study was to explore what could be changed in the local community to enable those with dementia to live well. People with dementia and carers taking part in the IDEAL programme responded to open-ended questions. Responses from 1,172 people with dementia and 702 caregivers were analysed using thematic analysis. Four themes were identified: raising awareness, improving access to support services, providing social events and activities, and supporting people to engage in the community. These highlight the role of individuals, resources and the environment in supporting those with dementia. Longer-term investment in services is needed to underpin dementia-inclusive communities. / The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.

This is a multi-method ethnographic study, grounded in symbolic interactionism and social constructionism, which seeks to explore the social worlds of people with dementia in institutional long-term care. Carried out over six months, it uses non-participant observation, Dementia Care Mapping, video-recording, focused conversations and extensive fieldnotes to document types of interactions that fourteen people with dementia received in everyday ward life and during weekly creative sessions facilitated by occupational therapy (OT) staff. Using Kitwood’s (1997) work on person-centred care and Sabat’s (2001) work on selfhood (Selfs 1-3) it identifies their responses to such interactions in terms of their well or ill-being and expressions of Self. The study shows that everyday staff interactions with participants, while sometimes positive, were more often limited in their potential for maintaining or increasing well-being. Sometimes staff interactions were abusive; causing participant ill-being. Participants expressed Selfs 1-3 verbally and visually, although some of these expressions were subtle, fleeting and fragile. During creative sessions, OT staff engaged in sustained positive interactions, raising participant well-being and facilitating Self-expression; a fragile expression of Self could become a robust expression of Self, a past Self could be reclaimed and a desired Self co-constructed. My findings suggest that, in their interactions during creative sessions, OT staff generally recognised and supported Self of participants, raising well-being. However, ward staff did not fully recognise and therefore could not support Self in their interactions with participants, resulting in participant ill-being. This is a crucial finding, which could partially explain the differences in interaction types I observed, and the corresponding differences in participant well-being and Self-expression. This thesis argues for integrating the selfhood and person-centred approaches into an innovative staff-training programme, in order to bring about transformational change in practice. This might encourage care staff to reach out, recognise and respond to aspects of Self as they carry out care; promoting more positive ways of interacting with their patients, increasing patient well-being and fostering staff satisfaction.

A sample of 22 persons who care for relatives exhibiting initial symptoms of senile dementia were administered paper-and- pencil questionnaires to determine their level of subjective burden and psychological symptomatology. Each participant's attributional style was measured on an internal-external dimension, and their causal attributions regarding their relative's symptomatic behaviors were assessed. Results indicated that attributional style did not predict specific attributions about illness-related behaviors, but the tendency to not blame an afflicted relative for their behavior was predictive of subjective burden and symptoms of depression and anxiety. Subjective burden was found to predict feelings of hostility in caregivers.

Abstract Frontotemporal lobar degeneration (FTLD) is the second commonest cause of dementia after Alzheimer’s disease (AD) in patients <65 years. Its most frequent clinical subtype is behavioral variant frontotemporal dementia (bvFTD) characterized by behavioral change and executive deficits. FTLD also encompasses two variants of primary progressive aphasia (PPA) characterized by language deficits. The majority of familial FTLD cases are linked to the C9ORF72 expansion mutation. As both cognitive and behavioral changes are core diagnostic features of FTLD, neuropsychological assessment is vital. However, neuropsychological literature is inconclusive regarding the most functional measures for detecting FTLD. Current knowledge on the cognitive profile of patients with the C9ORF72 expansion is scarce. The aims of this thesis were threefold: (1) to identify the cognitive measures that optimally serve the differential diagnosis of FTLD, (2) to characterize the neuropsychological profile of C9ORF72 expansion; and (3) to examine the utility of the Modified Frontal Behavioral Inventory (FBI-mod) in differentiating FTLD, AD, and mild cognitive impairment (MCI). The participants comprised FTLD, AD, and MCI patients diagnosed in the University Hospitals of Oulu and Kuopio. The patients underwent a detailed neuropsychological assessment including the CERAD neuropsychological battery (CERAD-NB) and the FBI-mod. While bvFTD was characterized by verbal fluency, working memory, and verbal comprehension deficits relative to AD, AD was associated with greater episodic memory impairments. The poorer delayed recall in AD was further evident on the memory tests of the CERAD-NB; however, its overall utility in the differentiation between FTLD and AD was limited. The C9ORF72 expansion carriers showed more severe executive deficits than non-carriers. The C9ORF72 expansion may further be associated with slowly progressing FTLD. On the FBI-mod, bvFTD was linked to amplified behavioral symptoms relative to AD, MCI, and PPA. Findings highlight the importance of incorporating a broad cognitive battery in the neuropsychological evaluation of FTLD. Though the clinical phenotype of C9ORF72 expansion appears broad, executive impairment likely is a core feature of bvFTD patients with the expansion. The use of the FBI-mod is recommended as a structured measure for behavioral symptoms of bvFTD. / Tiivistelmä Otsa-ohimolohkorappeumat on Alzheimerin taudin (AT) jälkeen yleisin työikäisten dementiaa aiheuttava sairausryhmä. Sen yleisin alamuoto on otsalohkodementia, jonka ensioireita ovat käyttäytymisen muutokset ja toiminnanohjauksen ongelmat. Sairausryhmään kuuluu myös kaksi kielellisin oirein ilmenevää alatyyppiä. C9ORF72-toistojaksomutaation on todettu selittävän suurimman osan perinnöllisistä tapauksista. Kognitiivisten ja käyttäytymiseen liittyvien muutosten arvioiminen on keskeinen osa taudin diagnostiikkaa. Tutkimustiedon perusteella on epäselvää, mitkä neuropsykologiset menetelmät soveltuvat parhaiten otsa-ohimolohkorappeumien tunnistamiseen. Tieto C9ORF72-mutaation kantajien kognitiivisesta profiilista on niukkaa. Tutkimuksen tavoitteena oli löytää neuropsykologisia menetelmiä, joista on hyötyä otsa-ohimolohkorappeumien erotusdiagnostiikassa ja selvittää C9ORF72-mutaation kantajien neuropsykologisia erityispiirteitä. Lisäksi haluttiin tutkia käytösoireita kartoittavan FBI-mod -läheiskyselyn hyödyllisyyttä otsa-ohimolohkorappeumien, AT:n ja lievän kognitiivisen heikentymän (MCI) erottamisessa. Aineisto koostui Oulun ja Kuopion yliopistosairaaloissa diagnosoiduista otsa-ohimolohkorappeuma-, AT- ja MCI-potilaista, joille oli tehty CERAD-tehtäväsarja, laaja neuropsykologinen tutkimus sekä FBI-mod. Otsalohkodementiaa sairastavat suoriutuivat AT-potilaita heikommin sanasujuvuutta, työmuistia ja kielellistä käsityskykyä arvioivissa tehtävissä, kun taas tapahtumamuisti oli heikompi AT:a sairastavilla. Myös CERAD-tehtäväsarjassa AT-potilaat suoriutuivat heikommin viivästetyn mieleenpalautuksen tehtävissä, mutta kokonaisuutena tehtäväsarjan kyky erotella otsa-ohimolohkorappeumaa ja AT:a sairastavat oli rajallinen. C9ORF72-mutaation kantajilla toiminnanohjauksen ongelmat olivat vaikeampia kuin ei-kantajilla. Lisäksi havaittiin, että C9ORF72-mutaatioon liittyvä sairaus voi edetä hyvin hitaasti. FBI-mod erotteli hyvin otsalohkodementiaa sairastavat AT- ja MCI-potilaista sekä otsa-ohimolohkorappeumien kielellistä muotoa sairastavista. Tulokset korostavat laajan neuropsykologisen tutkimuksen merkitystä otsa-ohimolohkorappeumien diagnostiikassa. Vaikka C9ORF72-mutaation kliininen kuva on vaihteleva, ovat toiminnanohjauksen ongelmat keskeinen osa taudinkuvaa. FBI-mod -kyselyn käyttö on suositeltavaa otsalohkodementiaan liittyvien käytösoireiden strukturoidussa arvioinnissa.

Caring for a family member or loved one with dementia places a heavy burden on those providing the care. Caregivers often develop chronic depression because of having to deal with this burden. A great deal of literature has been published discussing coping effectiveness, effects of social support, and other internal and external means of support for the caregiver. However, little has been written about the changes, if any, in depression that the caregiver experiences after the termination of care, either through institutionalization or death of the person with dementia. This study examined whether there is a change in depression of spousal caregivers after institutionalization of the dementia care recipient as well as any changes in depression that may have occurred as a result of the death of the dementia care recipient. Two theoretical models, the wear and tear model and the adaptation model were discussed in terms of caregiver depression after institutionalization of the dementia care recipient. Two other theoretical models, the relief model and the stress model, were discussed in terms of caregiver depression after the death of the dementia care recipient. Datasets from the National Institute on Aging sponsored Health and Retirement Study were analyzed. Results indicate that both male and female spousal caregivers report an increase in depression after the institutionalization or death of the dementia care recipient, but that as time passes, males report a decrease in depression while females continue to report an increase in depression.

Individuals are living longer now than they have in the past. As a result, there is an increased incidence in illnesses that are more prevalent in later life. One group of illnesses that is more prevalent is age related dementia. Alzheimer's disease (AD) and vascular dementia (VaD) are two common types of dementia found in the older adult population. Recent research suggests that these two types of dementia may both have a vascular component that is instrumental in their development. Not only may this vascular component be present in both these illnesses, but also it may be related to a more severe cognitive decline in the aging process. Results indicate that both cardiovascular disease and general and spousal social support in middle age are all three independent significant predictors of mild cognitive impairment and other non-normative cognitive impairment in later life. However, results do not indicate that social support moderates the relationship between cardiovascular disease and cognition.

Impairment of language-based communication is a hallmark of advanced dementia, which often leads to social isolation. However, nonverbal communication remains relatively preserved. Intensive Interaction, a nonverbal communication technique, offers a potential means for maintaining connections. This study assessed the feasibility of a full scale randomized control trial (RCT), to ascertain whether or not training care staff to use Intensive Interaction techniques could improve Quality of Life (QoL) for residents with advanced dementia. Using a non-randomised control design, staff in a nursing home were paired with a resident and offered training in Intensive Interaction, with video recordings of their interactions and QoL measures for the resident taken before and after training and at 3 month follow-up. These were compared to outcomes in a control home in which care continued as usual. Results from the intervention home indicated an increase in communication behaviours that facilitated and showed pleasure in interactions and a decrease in behaviours that hindered and expressed displeasure in interactions. Furthermore, scores on QoL assessment also improved. These changes were significantly different to those observed in the control home. Large effect sizes for these changes were suggestive of clinical relevance and thus further research through a full-scale trial is recommended.

Introduction: The evidence-base for the effectiveness of music on people with dementia is unclear, yet music is frequently used in the care of people with dementia. Little is known about formal dementia caregivers’ views on the use of music in their ward. The aim of this study was to investigate the attitudes of formal dementia caregivers towards the use of music in people with dementia through the development of a new attitudes scale, and to investigate if these attitudes may be related to staff attitudes to people with dementia and burnout. Method: 101 formal caregivers from NHS wards which accommodate people with dementia completed a survey consisting of the Staff Attitudes to Music questionnaire–Dementia version (SAM-D), translated and validated for the purposes of this study, the Approaches to Dementia Questionnaire and the Maslach Burnout Inventory. Data were analysed using exploratory factor analysis, reliability analysis and a series of correlational and multiple regression analyses. Results: The SAM-D is a useful measure of formal caregiver attitudes to the use of music for their patients, with three subscales, ‘Positive effects’, ‘Organisational facilitation’ and ‘Negative effects’. Most participants had positive attitudes to the use of music as a non-pharmacological intervention. Attitudes to dementia is a significant predictor of attitudes to the use of music, whereas burnout is not related to attitudes to music. Discussion: Alongside the evidence-base for music, staff attitudes should also be investigated, although development of an attitudes scale can be challenging. There are furthermore clinical implications for the use of music in people with dementia and caregiver attitudes. Future research may help assess the SAM-D’s psychometric properties further and investigate differences in attitudes of different professionals in various settings.

Bakgrund: I Sverige drabbas cirka 20 000 människor varje år av någon demenssjukdom. Sjukdomen medför med tiden intellektuella, psykologiska, beteendemässiga och kroppsliga försämringar som kan medföra minskad initiativförmåga och lidande. Genom att möjliggöra för personer med demenssjukdom att delta i aktiviteter som exempelvis musik, kan försämringar motverkas då musik stimulerar både kognitiva och fysiska funktioner. Syfte: Syftet med litteratursammanställningen var att belysa musikens betydelse för personer med demenssjukdom. Metod: Litteratursammanställningen inkluderade tio kvalitativa studier som valts från databaserna Cinahl, PubMed och PsycINFO. Studierna har granskats och analyserats med inspiration av kvalitativ innehållsanalys. Resultat: Resultatet av litteratursammanställningen visade att musik ökade livskvaliteten för personer med demenssjukdom och förbättrade interaktionen mellan dessa personer och vårdgivarna. Musik förbättrade även kommunikationen samt minskade beteendeförändringar. Konklusion: Resultatet visar på att musik fördelaktigt kan användas i demensvården för att främja välbefinnandet hos personer med demenssjukdom. Det finns emellertid ett behov av vidare forskning för att ytterligare kunna stödja fördelarna med musik i demensvården. / Background: Every year in Sweden nearly 20 000 people develop dementia. Dementia causes over time intellectual, psychological, behavioural and physical impairments which in turn can lead to decreased ability to take initiative and increased suffering. By providing people with dementia to participate in activities for instance music, impairments can be counteracted since music stimulate cognitive and physical functions. Aim: The aim is to illuminate the importance of music for people with dementia. Method: This litterature review include ten qualitative studies which were selected from the databases Cinahl, PubMed and PsycINFO. The chosen studies have been surveyed and analyzed with inspiration of a qualitative content analysis. Result: The result of the literature review showed that music increased quality of life for people with dementia and improved the interaction between patient and caregiver. Music also improved communication and reduced behavioral changes. Conclusion: Music can advantageously be used in dementa care in order to promote well-being for people with dementia. However, there is a need for further research to further support the benefits of music in dementia care.

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