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PO4. Needs and experiences of people with dementia and their family caregivers

Detailed programme and abstracts

PO4.1. Lonely or not? How do we really know?

HARTIGAN Irene, CORNALLY Nicola, JENNING Aisling, FOLEY Tony, MÜLLER Nicole, PARK Gyunghee, TIMMONS Suzanne

University College Cork, Cork, Ireland

Background: Loneliness has been shown to have direct negative consequences on people’s health. Research has identified that loneliness can increase a person’s risk of mortality as much as smoking or alcohol consumption. People with dementia are at particular risk of loneliness and social isolation. This can negatively impact on a person with dementia’s health and quality of life. To effectively address loneliness in dementia we must first understand how people with dementia experience loneliness.

Aim: To explore the concept of loneliness and dementia.

Methods: Interviews were conducted with people living with dementia (PLwD). Participants comprised of eight community-dwelling individuals, aged 55 years and older (mean = 63.8; range = 55-77), who were each diagnosed with dementia at least one year prior to interview (range = 1.16 – >5 years). Interviews were conducted in participants’ homes using a semi-structured format and lasted between 37-74 minutes.

Results: Three key themes were identified: the importance of maintaining meaningful relationships, maintaining independence and socio-cultural influences on individual perceptions of loneliness and dementia. The results emphasise the importance of maintaining both a sense of self and meaningful relationships with others post-diagnosis for individuals who identified themselves as “not lonely”. PLwD reported that the maintenance of social connection aids in fostering a sense of self-worth and self-management, which in turn mitigates feelings of loneliness.

The majority of participants existing social connections with others was established prior to their diagnosis, although the maintenance of these relationships may have required an adjustment of their premorbid routines and method of social engagement. This suggests that individual feelings of loneliness or lack thereof are not directly correlated to the coping mechanisms most commonly employed by individuals with dementia. Further exploration is need to understand how PLwD, who live at home, perceive or experience loneliness.

PO4.2. Advance care planning for people with dementia. A review of reviews on effectiveness, experiences, perceptions and views

VAN DAEL Annelien1, BUNN Frances2, LYNCH Jennifer2, PIVODIC Lara1, VAN DEN BLOCK Lieve1, GOODMAN Claire2

1End-of-Life Care Research Group, VUB, Brussels, Belgium, 2Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, United Kingdom

The importance of advance care planning (ACP) for people with dementia is increasingly recognized in palliative care research. This review of reviews aims to synthesize the evidence on effectiveness, experiences, perceptions and views of ACP for people with dementia and their carers.

PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library (CDSR & DARE), were searched (July 2018). No year limit applied. Review articles eligible for inclusion 1) evaluated effectiveness of ACP for people with dementia, or 2) described experiences, perceptions or views of ACP of people with dementia and their carers. Additional searches were conducted (September 2018) to identify primary studies published between 2016-2018 and not included in any of the reviews. Methodological quality was assessed using AMSTAR-2 and the Joanna Briggs Institute instruments. 

Nineteen reviews and 11 primary articles of variable quality and with a range of ACP definitions were included. Results showed ACP to be effective for people with dementia leading to increased concordance between care received and prior wishes, lower rates of hospitalization and satisfaction with care for people with dementia and carers. Analysis of the experiences, perceptions and views of ACP for people with dementia identified six recurring themes around how a dementia diagnosis affected, 1) the ACP approach, 2) the timing and process of ACP, 3) training for healthcare professionals, as well as people with dementia and their carers, 4) relationships between healthcare professionals and carers and between carers and people with dementia, 5) roles and responsibilities of healthcare professionals and 6) resources needed. 

In conclusion; ACP interventions have shown to be effective for people with dementia and their carers leading to satisfaction with care and improved personal and organizational outcomes. Education on topics related to diminishing decision-making capacity is key to optimize the ACP process for people with dementia and their carers.    

PO4.3. Diverse longitudinal trajectories of depressive symptoms on family caregivers of persons with Alzheimer disease

VÄLIMÄKI Tarja1, HALLIKAINEN Ilona2, KOIVISTO Anne3

1Department of Nursing Science, University of Eastern Finland, Kuopio, Finland 2Institute of Clinical medicine, Neurology, School of Medicine, University of Eastern Finland, Kuopio, Finland, 3Institute of Clinical Medicine, Neurology, School of Medicine, University of Eastern Finland; Neuro Center, Kuopio University Hospital, Kuopio, Finland

Objectives: The care of Alzheimer’s disease (AD) relies on family caregivers (FC). Depression may have a remarkable impact on their health and well-being. On the other hand, physical and psychological well-being together with the changed life situation effect experienced distress, which may increase depressive symptoms. It is vital to identify FCs who have depression at the early stage of caregiving and if that predicts emerging distress and affects health.

Methods: This study is a part of the five-year ALSOVA-study with annual follow-ups (FUs). Total of 226 FCs and persons with Alzheimer's disease (AD) were included in this sub-study.  The Beck Depression Inventory (BDI) was used to analyze FC’ depressive symptoms. First, we identified different trajectories of FC’s depression. Then, differences in age, education, and gender of both, care relationship, AD-related symptoms, and FC’s health factors were analyzed between the trajectory groups. 

Results: We found three trajectories in FC’s depressive symptoms: At the time of CR’s AD diagnosis and baseline 1) Few (7.5 %) of FCs had depressive symptoms which diminished during FU, 2) 32.7 % of FC’s had depressive symptoms which increased over FU and, 3) 59.7 % had minor depressive symptoms all the time. Several demographic variables, FC’s distress, and CR’s neuropsychiatric symptoms differed between groups.

Conclusions: Depressive symptoms increased in third of FCs during extended caregiving. Most FC’s have few depressive symptoms although challenges caregiving may cause. In clinical practice, it is essential to recognize risk and supportive factors that are related to FC’s well-being.

PO4.4. Der Demenz-Podcast. A podcast series for relatives of people with dementia

SCHÖN Christine

Herzton - Mediale Begegnungsräume für Generationen e.V. (Heart Sound – media based meeting places for generations), Berlin, Germany

Dementia affects not only the person who receives the diagnosis: Particularly relatives who take care of people with dementia are highly stressed by providing support. Not only do they work 24/7, they are also dealing with the changes of a person they love and in addition, have to deal with authorities, insurances and doctors.

Often, there is not enough time for the care-giving relatives to get all the information they need. In particular, there is a lack of easily accessible offers that cost nothing and yet are of high quality.

In order to fill this gap, we produce a monthly podcast for relatives of people with dementia that offers help and is free of charge. With the support of experts (people with dementia, family caregivers, doctors, nurses, social pedagogues, psychologists etc.) we talk about one specific topic in every episode - that can be listened to while preparing breakfast, driving to work or day care. The podcast offers very concrete support and answers questions like: Is a diagnosis important? How can we spend meaningful time together? How can we deal with dementia in public? How can we respond appropriately when the beloved person changes, e.g. when he or she becomes aggressive, anxious or suspicious. Legal aspects are addressed: Matters such as the powers of attorney, a disabled ID card, legal support in case of business inability. And very important: How can a caring relative continue to live a fulfilling and happy life without burning out?

Each podcast episode is about 30 minutes long. The dementia podcast is available on streaming platforms, pod catchers and on www.demenz-podcast.de

In my poster presentation, I will provide audio samples and will report on the experiences of 6 months online – to hopefully encourage people in other countries to provide a dementia-podcast in their language.

PO4.5. Establish a universal health care network of people with dementia and their family caregivers in Taipei city

LIN Hui-Ya1, LIU Wei- Hsien2, WANG Suh-Chin2, LEE Pi-Hui2, HUANG Shier-Chieg2, LIU Chien-Liang2, CHEN Li- Wen

1Department of Health, Taipei City Government, Taipei, Taiwan, Province of China, 2Taipei, Taiwan, Province of China

The goal is to transform Taipei into a healthy, happy, and tolerant city. The population of people with dementia in Taipei is estimated to be at 38,990.  To fully support people with dementia and their family caregivers, the Department of Health of Taipei City Government developed a variety of people-centered resources that encompass prevention, screening, and post-diagnosis care.

The establishments in 2018, include 12 hospitals for diagnosis, 6 hospitals for case management, 2 Integrated Dementia Care Centers (IDCC), 11 Support centers for People with Dementia and their Families (SPDF), 1 group house for people with dementia, and 24 day care centers. Other services, professional dementia care training, family caregiver training, and courses for regaining self- confidence and maintaining daily activities. To plan continuing Care Retirement Communities (CCRCs) for dementia care, will be established in Beitou (at the reserve for Xiushan Elementary School). Together, these efforts comprise a dementia care network in Taipei City.

With municipal funding, Taipei City integrated health centers, hospitals, clinics, and Department of Social Welfare branches throughout twelve districts. 56,833 people were seniors checkup and screened for dementia in 2018.  Among suspected cases referred to twelve specially designated dementia clinics and hospitals for diagnosis in Taipei, 1,844 people received a positive diagnosis. According to the symptoms severity or needs, continued service for people with dementia is available to provide people-centered case management and develop strategies that prevent them from getting lost. In 2019, the city increased the number of IDCCs to 5 and SPDFs to 24 (2 in each administrative area) to implement area-specific service and care. Through these methods described above, the city has provided service to a total of 290,000 people. Our successful model can be applied to areas outside of Taiwan to create a better care environment for people living with dementia.

PO4.6. Respite care for people with dementia in Taipei city

LIN Hui-Ya1, LIU Wei- Hsien2, WANG Suh-Chin3, LEE Pi-Hui4, HUANG Shier-Chieg5, LIU Chien-Liang6

1Department of Health, Taipei City Government, Taipei, Taiwan, Province of China, 2Taipei, Taiwan, Province of China

Caring for people with dementia can be a long and difficult process. The average length of care in Taiwan is 9.9 years. To alleviate the burden and stress on family caregivers, the new Long-Term Care Assessment 2.0 has taken the burden on caregivers into consideration. After a professional assessment, the most appropriate service will be provided based on case requirements, and respite care or psychological counseling will be given to caregivers. Respite care is available according to the level of disability. CMS Level 2-6: NT $32,340/year/person and CMS Level 7-8: NT $48,510/year/person. There are 3 kinds of respite care: (1) Institutional respite care: 24-hour care including nursing, bathing, dining, taking medication, and making activity arrangements (each session is 24 hours). (2) Home respite care: dementia care services provided by resident care attendants in requestors’ home (each session is 3 hours or 6 hours). (3) Community respite care: like to day care centers (transportation included; available in half-day or whole-day); hourly neighborhood respite care. It is convenient to apply for these services in Taipei through one-stop windows of the 1966 hotline. In 2018, Taipei had 35 institutional respite care providers, 7 home respite care providers, and 8 community respite care providers (including 1day care center and 7 neighborhood respite care providers) for a total of 50 providers (29 more than 2017). In 2018, the respite care service was used by 469 people (for 3701 times). Our successful model can be implemented in areas outside of Taiwan to create a better environment for people living with dementia. 

PO4.7. "Who would be selected as the main caregiver?" - A paradigm shift of caregiver support services on dementia care in Chinese Society

CHUI CHI MAN Kenny

1Chinese University of Hong Kong, Hong Kong, Hong Kong

Traditionally, the caregiver is defined as "a family member (or friend) helping someone on a regular basis with tasks necessary for independent living" (Zarit and Edwards,1996). When we are focusing much on how to intervene or offering various kinds of support to the family caregivers, have we yet considered who and why the specific one to be the "main caregiver"? What are the mechanism and the criteria to be the "selected" one as the main caregiver in the Chinese society? Were any differences between the Chinese and the Western countries? 

Regarding the situation in Hong Kong, it was found that the family member taking care of person with dementia will be easily to be "chosen" with five common factors. The factors were (1) Female; (2) Living together or living closely; (3) Not married without other family's burden; (4) the capacity of earning money without bargaining power among the family members; (5) the weakest status of power in the family dynamics. He/She may not be the voluntary one but being "chosen" in the Chinese traditional norms and filial piety. He/she may not be ready or even not willing to be the main caregiver but no choice. The "being chosen" one will pick up the main caregiver's role with negative emotions, such as anger, despaired, blame, disappointment, etc. It is vital for the practitioners to be aware and makes a paradigm shift on designing the caregivers' support services.

The understanding of the family caregivers is suggested shifting to a model, called "PREFERS" in dementia care. It stands for "P-Physical conditions", "R-Relationship within the family", "E-Emotional status", "F-Financial planning and care budgeting", "E-Education on dementia care", "R-Resources accessibility" and "S-Social burden without dementia friendly society". The psycho-educational programme had been provided through the model of "PREFERS" and contributed to the positive changes eventually. 

PO4.8. Stability of home-based dementia care: A conceptual model in the context of the German health care system

HOCHGRAEBER Iris, DREYER Jan, KÖHLER Kerstin, HOLLE Bernhard

German Center for Neurodegenerative Diseases (DZNE), Witten, Germany

Background: Most people with dementia want to live at home as long as possible. Usually family members take over the role of informal carers during the trajectory of dementia and struggle to maintain a stable situation. In most countries as well as in Germany “aging in place” is an important goal in current health care policies. The constitution of stability in home-based dementia care is under-researched and we do not know how the health care system (and respective care structures) can be supportive with regard to the stability of these care arrangements.

Objective: The aim of this presentation is to introduce a conceptual model of stability and to discuss it in the context of health care structures in Germany by using selected professional guidelines.

Methods: A meta-study on mixed research was performed (PROSPERO registration number: CRD42016041727) to develop a conceptual model of stability in home-based dementia care arrangements. Selected professional guidelines were analysed with regard to their matching with the core concepts of the conceptual model of stability.

Results: 99 publications were included in the meta-study. The conceptual model consists of 4 elements: the dementia care trajectory, a cycle of acting of the informal carer, 4 determining concepts (needs, carer role, dyadic relationship, resources) and the contextual conditions (society, health care system). The German health care system is fragmented and informal carers consult different contact persons (e.g. general practitioners) for support. The core concepts of stability are addressed in professional guidelines (e.g. the S3-Guideline “family carer” for general practitioners). But currently the guidelines lack to illustrate the relations between these concepts and the implementation remains unclear.

Conclusion: Currently, the conceptual model can inform the contact persons about the constitution of stability and may guide conversations and counselling. Furthermore, the conceptual model can be considered in future guidelines.

PO4.9. The Tipi Project: Connecting people to nature

COUNCILL Gillian1, WRIGHT Kenny2

1Alzheimer Scotland, Inverness, United Kingdom, 2Alzheimer Scotland colleague, Inverness, United Kingdom

People living with dementia are amongst the population of people who are at risk of becoming socially isolated, lonely and depressed, and as a result often develop a more indoor lifestyle. Accessing and spending time outdoors is an important part of living well with dementia and has been proven to enhance mental, physical and social well-being.

The aim of the Tipi Project is to enable people living with dementia and their families to spend time in the outdoors in a supportive and social environment.

We use a Tipi tent as an outdoor learning space to run groups for people living with dementia and their families. It acts as the platform to re-connect people to the outdoors. The idea of having a non-permanent structure like this is so that it can be immersed into a woodland or forest surrounding to create that outdoor/indoor effect and provide a stimulating environment. The structure is heated by a wood burning stove allowing us to run all year round; the evolutionary and relaxing response people get from socialising and eating lunch prepared on a log fire, is intangible. We can have exposure to and feel the benefits of the outdoors, with the comfort and safety of shelter.

The sociable layout of the structure is optimal for positive interactions and the setting is free from modern day sounds and stressors. We provide a multisensory, absorptive and social experience with a strong focus on therapeutic intervention. Each month we try different activities, learn new skills and take walks in the surrounding woodlands. The Tipi project has been so successful, and the benefits unquestionable.

Our belief is that access to the outdoors is a human right and that people living with dementia and their carers and families have the right to this opportunity as much as anyone else.

PO4.10. More than 60 family support groups in Flanders help increase coping capacity of caregivers!

VANDEVEIRELinda, VANWELCKENHUIJZEN Cindy, LAMERS Hilde

Alzheimer's League Flanders, Turnhout, Belgium

Alzheimer’s League Flanders aims to reach as many caregivers and family members of people with dementia and young dementia as possible in Flanders (Belgium).

Starting up and leading Family Support Groups (Young) Dementia is one of our core activities. With these support groups we respond to one of the greatest needs of caregivers and family members of people with dementia: informal and quick access to a wide range of useful and practical information on dementia and contact with fellow caregivers. We focus on the psychosocial needs of family members and caregivers to help them increase their coping capacity.

A Family Support Group (Young) Dementia of the Alzheimer’s League Flanders is an open self-help group for family members and caregivers of people with (young) dementia. In addition to the information provided, contact with fellow caregivers in particular ensures that caregivers feel heard and supported. They learn from each other best practices and realize they are not alone and can ask for help when needed.

 “From the stories of other caregivers you learn that, despite the illness and the challenges, there are still opportunities in life and beautiful moments to share. I was still traveling with my wife, we attended concerts. Sharing positive stories can give a lot of courage and hope”, says Tom, caregiver in one of the Family Support Groups.

Alzheimer’s League Flanders currently manages more than 60 Family Support Groups Dementia spread throughout Flanders, including 10 Support Groups Young Dementia in collaboration with various regional partner organizations.

A Family Support Group (Young) Dementia can decide whether to include persons with (young) dementia in their meetings. We call this a Family Support Group (Young) Dementia PLUS.

Since beginning 2019 we also set up a Flemish Support Group Frontotemporal Dementia (FTD) for caregivers and family members of persons with frontotemporal dementia.

PO4.12. Assessing positive caregiving experiences in dementia: A comparison of properties of the PES, PAC, and GAIN

SMALING Hanneke1, JOLING Karlijn2, ACHTERBERG Wilco1, FRANCKE Anneke3, VAN DER STEEN Jenny1

1Leiden UMC, Department of Public Health and Primary Care, Leiden, Netherlands 2Amsterdam Public Health Research Institute, Amsterdam UMC, location VU University Medical Center, Department of General Practice and Elderly Care Medicine, Amsterdam, Netherlands 3Amsterdam Public Health Rresearch Institute, Amsterdam UMC, location VU University Medical Center, Department of Public and Occupational Health, Amsterdam, Netherlands

Background: Family caregivers’ positive experiences are less frequently used as an outcome of research compared with family caregiver burden. Outcome measures to assess such positive experiences have been developed but they need further testing and validation. 

Objectives: 1) to evaluate the validity, reliability, and feasibility of the Positive Experiences Scale (PES), Gain in Alzheimer care INstrument (GAIN) and Positive Aspects of Caregiving questionnaire (PAC) in family caregivers of people with dementia living in a nursing home; and 2) to examine whether demographic characteristics relate to positive caregiving experiences. 

Methods: A sample of 68 family caregivers (mean age=60.4 years, SD=12.5; 71% female) from 4 Dutch nursing homes participated. PES, GAIN, PAC and a self-rated Visual Analogue Scale (VAS) were used to measure positive caregiving experiences. Reliability, construct validity, and feasibility were examined using Cronbach’s alpha's, Pearson-product-correlations, t-tests, and descriptive statistics. 

Results: Internal consistency was .68 for the PES, .90 for the GAIN and .94 for the PAC. Moderate to strong positive correlations were observed between the PES, GAIN, PAC and VAS. No associations were found for caregiver's educational level and gender, and their relative’s severity of dementia. Only the VAS and PES were weakly positively associated with the caregiver's age. A ceiling effect was observed for the PES. The feasibility was lowest for the PAC; most missing items, least preferred by respondents, and most items that were deemed unclear or not relevant. 

Conclusion: Although all instruments had satisfactory psychometric qualities, the GAIN may be the preferred instrument for measuring positive caregiving experiences in caregivers of people with dementia living in a nursing home, followed by the PES and PAC.

PO4.13. Effects of group visits to advance care planning (ACP) in people with cognitive impairment and their families

LIU Chien-Liang1, YANG Chun –Yi2

1Taipei City Hospital, Dementia Center, Taipei, Taiwan, Province of China, 2Taipei City Hospital, Social worker office, Taipei, Taiwan, Province of China

Objectives:Group visits for ACP may help people with cognitive impairment and their families’ document preferences for decision making and future care. We assessed the impact of ACP group visit intervention on people with cognitive impairment and their families.

Materials & Methods:People with cognitive impairment (Clinical Dementia Rating, CDR = 0.5 or 1, n=4) and their families (n=6) had been participated in ACP group visits. An ACP group visit included a geriatric neurologist, a dementia special nurse and a social worker. After the visit, 2 focus groups were held. The focus group discussions were analyzed using the method of constant comparative analysis.

Results:Five types of advantages were distinguished:

  • Tended to be more engaging in detailed discussion
  • Was willing to share personal values and challenges related to ACP
  • Patient and family member’s satisfaction were increased
  • Self-efficacy was improved
  • Was able to get consensus under shared decision model
  • On the other hand, we also found two disadvantages as below:
  • People with cognitive impairment would be disturbed due to environmental noise
  • Sometimes family members will focus on their own problems and ignore the needs of patients.

Conclusion:The results of our study is to demonstrate the advantages and disadvantages of ACP group visits for people with cognitive impairment. Group visits isbeingconsidered as the contributing ACP model under the risk management of potential harm. It needs to be addressed through the development of practical guidelines and educational interventions, under the consideration of progressive cognitive decline and future care.

PO4.14. The importance of the "triangle of care" and music in the dementia care on Curacao

THOONEN Miss Henriette (Jet)

Kas Hugenholtz, centrum voor dementie op Curacao, Willemstad, Curacao, Netherlands Antilles

Kas Hugenholtz is the only nursing home on Curacao where all the habitants have a form of dementia. We have young people with dementia and the eldery too. At this moment we have room for 68 people who are living with us. We also have daycare, open 7 days a week.

The people who are living with us have all forms of dementia. Our building is very old and not suitable for this specialised care anymore. We don't have all the necessary materials. For us at Hugenholltz, the way we treat the people with dementia and their family is most important. (family care- care responsability).

On Curacao, the dementia care is not priority on the political agenda. For years, we are busy working on a national plan of dementia care on Curacao. We keep on asking for the help that is urgently needed. Because we have a lot of people with dementia on the island, especially the Mutiple Infarct Dementia.

At Hugenholtz we work with the ‘triangle’ of care. That means that family participation is very important and that the caregivers have a lot of contact with the familys. Therefore, we use for example the Ipod project. We use music to connect. Every habitant has his of hers own Ipod with their special music that brings back memories. It helps family to connect again. And it also helps the caregivers to connect with the family on one hand and the habitant on the other hand. One can't without the other. They are connected for life. Once you understand that, the care goes to a higher quality level; triangle of care. The music also has its influence on the behaviour. When communication through words isn't possible anymore, there is music in the triangle of care. 

PO4.15. Identifying informal caregivers needs for support when caring for a person with dementia

CLEMMENSEN Trine Holt1, LAURIDSEN Henrik Hein2, ANDERSEN-RANBERG Karen3, KRISTENSEN Hanne Kaae4

1UCL University College, Odense, Denmark, 2Institute of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark, 3Dept. of Public Health, University of Southern Denmark, Odense, Denmark, 4Health Sciences Research Centre, UCL University College, Denmark; Dept. of Clinical Research, University of Southern Denmark, Odense, Denmark

Background: Caring for a person with dementia predisposes to mental and physical illness in caregivers, and supportive services are needed. Informal and formal caregivers express different views on informal caregivers’ needs for supportive services. Also, informal caregivers have trouble expressing their own needs and are more focused on the needs of the person with dementia. When identifying caregivers’ support needs, it is therefore important to recognize numerous ways of expressing needs. No instrument exists to assess informal caregivers' needs for support. An instrument would facilitate informal caregivers’ needs for supportive services. The aim of this study is to identify informal caregivers expressed needs for support in order to develop and validate an assessment instrument.

Design and Methods: A qualitative approach is used. A combination of focus group interviews with informal and formal caregivers, and individual interviews with informal caregivers considered the different perspectives on caregivers’ support needs.

Results: An inductive content analysis identified four domains of informal caregivers’ expressed needs for support: 1) Daily life with dementia, 2) Focus on informal caregivers, 3) Well-being of the informal caregiver, and 4) Communication and interaction with surroundings.

Discussion: Informal caregivers express needs for support on their own. Regardless of the relation to the person with dementia, informal caregivers have needs for support in common. The four domains identified reflect a multidimensionality of informal caregivers' needs for support. When developing an assessment instrument, it is important to consider this multidimensionality. The four identified domains of informal caregivers’ support needs constitute a promising framework to develop an assessment instrument specifically for use in health and social care.

PO4.16. Discrepancy between performance and ability to perform tasks in people with dementia:  Does family carer management style influence this discrepancy?

CAMINO Julieta, KHONDOKER Mizanur, KISHITA Naoko, MIOSHI Eneida

University of East Anglia, Norwich, United Kingdom

Background: Discrepancy between carers’ appraisal of the people with dementia’s (PwD) performance of daily tasks and PwD’s actual ability to perform them has been an important topic in the literature, but most studies have investigated if carer’s burden and depression affect this appraisal.

Objectives: To (1) investigate if carers’ appraisal of PwD’s performance of activities of daily living (ADLs) is consistent with PwD’s actual ability to perform them; (2) evaluate if carer management style has an effect on this discrepancy.

Methods: Thirty-six PwD completed a performance-based ADL assessment (Assessment of Motor and Process Skills-AMPS); their carers were interviewed with an informant-based ADL assessment (DAD).  Carers also completed a dementia management style scale (DMSS) that categorises the carer’s style in: Criticism, Active-Management and Encouragement. Cohen’s kappa compared the agreement/disagreement between PwD performance (DAD) and their ability (AMPS) in ADLs. Logistic regression analysis explored if/which carer style may explain the discrepancy between the performance and the ability to perform tasks.

Results: The majority of carers either underestimated (80.6%) or overestimated (19.4%) (disagreement) the PwD’s ability to perform tasks; only 19.4% of carers reached an agreement between performance and ability. Cohen’s kappa=0.11 (95%CI, -0.003 to 0.21) indicated low level of agreement between PwD performance and the actual ability. Odds ratios (OR) for the three management styles (Criticism, Active-Management, Encouragement) were 1.001 (95%CI: 0.95 to 1.06), 1.03 (95%CI 0.96 to 1.10) and 1.02 (95%CI: 0.94 to 1.12) respectively. The OR estimates indicates that for a unit (1%) increase in the scores measuring the management styles, the odds (likelihood) of disagreement increased by only 0.1%, 3% and 2% respectively, none of which were statistically significant.  

Conclusions: the disagreement between the performance and the ability to perform tasks proved to be high in this group, which does not seem to be explained by carer management style.

PO4.18. Needs of vulnerable older patients receiving healthcare in hospital and at home with a focus on persons with dementia

DOSTÁLOVÁ Vladimíra, BÁRTOVÁ Alžběta, BLÁHOVÁ Hana, SHIELLS Kate, HOLMEROVÁ Iva

Charles University, Faculty of Humanities, Prague, Czech Republic

Our population is rapidly aging and vulnerable older patients have increasing care needs, particularly those with dementia.  The needs of these patients in hospital and at home receiving healthcare have not been sufficiently explored. There are few publications in the Czech Republic in this field, and existing publications have mostly summarized certain theoretical principles, but do not provide evidence-based research on the needs of vulnerable older patients, including patients with dementia.

Objective: Our project n. 760219 (Met and unmet needs of vulnerable older patients receiving healthcare at home and in hospital) was accepted for funding by the Grant Agency of Charles University. Its aim is to provide a comprehensive overview of the needs of vulnerable older patients and patients with dementia.

Methods: The first deliverable of the project will be a scoping review of met and unmet needs of people with dementia receiving healthcare at home and in hospital. This review will be conducted by searching databases (PubMed, Web of Science, ProQuest Central, Scopus, and Cinahl) and grey literature, including local resources and publications, for further information.

Results: The poster will present the first results from the scoping review of met and unmet needs of people living with dementia who .receive healthcare at home and in hospital.

PO4.19. What functions of mobile health management application for people living with dementia are used most depending on the cognitive level?

QUINTANA Maria1, GARCÍA-BETANCES Rebeca2, CANO Neus1, ARREDONDO-WALDMEYER Maria Teresa2, GAROLERA Maite1

1Brain, Cognition and Behavior: Clinical Research. Consorci Sanitari de Terrassa, Spain 2Life Supporting Technologies (LifeSTech), Superior Technical School of Telecommunication Engineers, Universidad Politécnica de Madrid (UPM), Madrid, Spain

Introduction: In recent years, different mobile applications have been developed aimed at improving the quality of life of people living with dementia (PWD) and their caregivers. SMART4MD (www.smart4md.eu) is a general e-health application which has been adapted specifically for PWD through a structured process involving the participation of PWD, carers, and health care professionals. The objective is to study what functions of SMART4MD application are most used depending on the cognitive level.

Materials: Participants were provided with a data-enabled computer tablet with the SMART4MD application. The core functionalities of the application are based on reminders (medication, appointments with healthcare providers, meeting up with family, etc.), cognitive supporting activities (clock, calendar, brain games, photos) and optional status and health information sharing with family and informal carers (including mood, specific health problems such as headaches). The MMSE is administered both before using the app and after six months of use.

Method: A total of 97 subjects with cognitive impairment were included, mean age 73.94 years (SD = 7.94) and 58.76% were women (n=57). All participants were recruited from Consorci Sanitari de Terrassa (Barcelona).  After 6 months of use of the SMART4MD, the use they made of each of the application's functionalities was analyzed.

Results: The results show that the functions most used by subjects that improve in the MMSE was my reminders (27.44%). While if you study the complete sample were games and news (28.05%). On the other hand, the highest correlation was between the MMSE at month 6 and the games and news function (0.2029), although this correlation is not significant.

Conclusions: The study of how cognitive level on the interaction with mobile applications of subjects with cognitive impairment can help us to develop more appropriate tools for this type of population.

PO4.20. Lessons learned from improving the quality of involvement: A case study of the EPIC trial

GRIFFITHS Alys1, SURR Claire1, FORTESCUE Susan2

1Leeds Beckett University, Leeds, United Kingdom, 2Alzheimer's Society, London, United Kingdom

The processes of public and patient involvement are infrequently evaluated or reported, particularly when things that have not worked well. The DCM-EPIC randomised controlled trial aimed to understand whether Dementia Care Mapping reduced behaviours typically associated with agitation for people living with dementia in care homes. To represent the experiences of people with dementia and their families in the trial design and delivery, a Lay Advisory Group was set up. This included people who were living with dementia, a relative of someone with dementia, or working in the care sector. They were initially consulted on trial design and recruitment documentation. However, the researcher co-ordinating the group moved institution, leading to the Lay Advisory Group not meeting or being involved for several months. Eighteen months before the trial ended, a second researcher began to co-ordinate the group. At this time, the group felt that they had not contributed much, despite being incredibly passionate about the research area and were concerned that involvement was just tokenistic. A new model of involvement was subsequently implemented led by the group itself.  Rather than being asked to review documents, the group collectively designed and developed content, and reviewed further versions. The group set its own priorities and highlighted areas of the trial to be focused on. They are now writing dissemination outputs and have a plan of dissemination activities that they will lead and be responsible for, with support from the research team as required. This poster will present the group’s experiences and future plans, and share how this model was facilitated. The lessons learned from these experiences will benefit researchers in the early stages of establishing Lay Advisory Groups or consulting with expert individuals. 

PO4.21. Developing a Kundalini yoga intervention with and for couples living with dementia

HELLSTRÖM Ingrid1, BRANDTBERG Betty2, WESTÖÖ Ann2

1Linköping University, Norrköping, Sweden, 2Vrinnevi hospital, Norrköping, Sweden

Responding appropriately to the needs of people with dementia and their care partners represents a significant challenge for policy makers and practitioners. The majority of people diagnosed with dementia live in their own homes, many of them together with their spouse. It is therefore important to support not only the spouse but also the couple as unit to be able to sustain their quality of life as long as possible. The aim was to develop a yoga intervention for couples living with dementia at home. There are few studies in this area and even more limited for people living at home.

The study had ethical approval. Fourteen persons living with dementia and their care partner were included, and they participated in three different groups. The age range was 61-87. The Kundalini yoga sessions, with a Kundalini yoga instructor, were held once a week over 8 weeks. During the yoga sessions, participant observations were performed and field notes were written. The day after each yoga session, the couples were telephoned and a short interview was conducted. The telephone interviews were audio-recorded and summarized. The field notes and summaries of the telephone interviews were analyses using content analysis.

Even though the focus was not on the effect of the intervention, the overall experience of participating in the yoga intervention were positive for both in the couple. The person with dementia reported feelings such as “being in the present”. The study report on knowledge on how to develop a yoga intervention for couples. Including persons with dementia and their partners is important in order to create an intervention that avoid taking as its starting point the notions of the professional care workers. People with dementia and their care partners have first-hand experience and knowledge about how to develop interventions.

PO4.22. Psychoeducational program for informal caregivers: An experience in a psychogeriatric service

SOBRAL Margarida

Psychogeriatrics Service, Hospital Magalhães Lemos, Porto, Portugal; Center for Health Technology and Services Research (CINTESIS); Research and Education Unit on Aging (UNIFAI/ICBAS‐UP), University of Porto., Porto, Portugal

Objectives:The purpose of this study was to determine the effectiveness of a psychoeducational program developed in a psychogeriatric service, evaluating the impact of these psychoeducational groups on informal caregivers (IC) of people with dementia (PwD) regarding burden, quality of life (QL) and satisfaction with life (SWL).

Methods:The sample consisted of 64 IC of PWD, who attended the “Psychoeducational Program to deal with dementia” at the Psychogeriatric Service (SPG), Hospital Magalhães Lemos, between 2013 and 2018. This program was a multidisciplinary intervention which lasted 7 sessions, having been constituted 6 groups. Sociodemographic data and information on the profile of these IC´s was collected and assessment instruments (SWL Scale, QL Scale and Zarit Burden Interview) were applied before and after the psychoeducational interventions (PI).

Results:IC had a mean age of 63.39 years, were mostly women (57.8%), married (73.4%), with a mean educational level of 9.34 years, retired (53.1%), 25% unemployed, the majority wife/husband (42.2%) or daughter/son (40.6%) of the PWD. Most of the IC (70.3%) lived with the patient, cared for more than 3 years (54.1%), 24 hours a day (64.1%), changed their personal life (65.6%), felt the need for support or institutional responses (65.6%) and the need for information about the disease (85.9%). In the post-group evaluation, means values were better than those obtained in the pre-test in the burden, QL and SWL. In 2015 and 2016, there was a statistically significant difference between the means (pre and post-test) with respect to QL and in 2015 also regarding SWL.

Conclusion:In the post-intervention evaluation, better results were obtained in all the caregivers' evaluation tests compared to the pre-intervention evaluation. The PI in SPG promoted an improvement in the QL of IC of PWD and improvement of conditions assessed before the intervention, namely, SWL and burden of care.

PO4.23. Virtual reality and dementia (1998-2018): A systematic comparison between web of science and scopus

SOBRAL Margarida1, PESTANA Maria Helena2

1Psychogeriatrics Service, Hospital Magalhães Lemos; Center for Health Technology and Services Research (CINTESIS); Research and Education Unit on Aging (UNIFAI/ICBAS‐UP), University of Porto, Porto, Portugal, 2University Institute of Lisbon (ISCTE-IUL), Lisbon, Portugal; Research and Education Unit on Ageing (UNIFAI, ICBAS, UP), Lisboa, Portugal

Dementia is a syndrome whose symptoms are characterized by difficulties in memory, language, problem solving, and other cognitive abilities that affect a person's ability to perform daily activities. Virtual reality (VR) is implemented as a combination of technologies, being used as a tool to improve cognitive abilities, improve the wellbeing of people with dementia, and also helping researchers to discover ways to diagnose the condition much earlier.

Despite Web of Science (WoS) and Scopus are widely consulted in research evaluations, there is no clear evidence about studies about VR and dementia. In response this poster, by applying bibliometrics, analyses a set of 355 documents, 203 articles, 252 sources of publication, 189 journals, and 19,238 citations indexed in both platforms from 1998 to 2018.

The results show differences in terms of scope, volume of data and coverage policies. For each new publication and citation in WoS there are 0.997 publications and 10.3 citations in Scopus. Compared to WoS, Scopus has a lower number of co-authors per document, article, journal and international collaboration, while covers more sources, documents and has a higher productivity rate and higher impact in the expansion of knowledge. Cyberpsychology and Behaviour is the top journal for Scopus while Journal of Alzheimer Disease is the correspondent one for WoS. USA and UK share the top of co-authorship in terms of national collaboration in Scopus, while for WoS is France. Both platforms converge of neuroscience has the main area of research, also considering: Riva and Magda Tsolaki have the most productive and h-index authors, USA as the top country with co-authorship international collaboration and in a relatively high growing trend of research.

This poster contributes to the knowledge of characteristics and to the development of a field of research (VR and dementia) applying a bibliometric analysis through WoS and Scopus.

PO4.24. The challenges of recruiting family carers of people with dementia to workshops – Experiences from Ireland

DEEGAN Kevin, HUGHES Zoe, O’SULLIVAN Liam

Care Alliance Ireland, Dublin, Ireland

There are an estimated 60,000 family carers who provide care for approximately 35,000 people affected by dementia in Ireland [1]. This number is also likely to grow in the next 30 years as the projected number of people to be affected by dementia by 2050 is expected to reach over 150,000 people.[2]

In 2015, the Irish Health Research Board (HRB) funded a three-year project aimed at enhancing the levels of resilience of family carers of people with dementia. This project, hosted in University College Dublin (UCD), and with the aid of key voluntary sector partners led to the development of an online resource for family carers called Take Care of Yourself [3]. This website was co-created by volunteer family carers of people with dementia. 

In the later stages of the project, six knowledge exchange workshops were organised to disseminate this new resource across Ireland. Research has shown that recruiting family carers to attend such events and supports in general can be a challenge (in particular in rural areas) [4], and so a multi-component strategy was developed by the research team to maximise attendance. This poster will detail the use of traditional and non-traditional methods to maximise attendance (including the use of social media), highlight some of the challenges faced by the dissemination team, and make recommendations to projects facing similar challenges. These recommendations will be applicable to an international research and support audience.

[1] Eamon O’Shea, Suzanne Cahill, and Maria Pierce, ‘Developing and implementing dementia policy in Ireland’, 2017, 148.

[2] Maria Pierce, Suzanne Cahill, and Eamon O’Shea, ‘Prevalence and projections of dementia in Ireland, 2011 - 2046’, 2014.

[3] https://www.takecareofyourself.ie/

[4] R Winterton and J Warburton, ‘Models of Care for Socially Isolated Older Rural Carers: Barriers and Implications’,Rural and Remote Health11 (2011).

PO4.25. Strategy insights of the online platform dementie.nl to support caregivers and people dealing with dementia

KOSTER Yvonne

Alzheimer Nederland, Amersfoort, Netherlands

Dementie.nl, part of Alzheimer Nederland, has a mission: The online platform wants to make a difference for family caregivers and people who are dealing with dementia in their personal environment.

Since its launch in 2016 the website is growing rapidly, resulting in more than 1 million visitors this year with a rating of 8,1 on (a scale of 10). By combining factual information with emotional support the platform provides aid on different levels. The aim of this is to increase the platform’s impact on the groups involved.

The poster shows the broad but well thought range of services of dementie.nl in an infographic:
 Information, with more than 260 articles, support and advice with various tools like the network support app Myinlife, tests, experts for asking questions and also relevant news, all bind together with personal stories and blogs from people who are dealing with dementia in their family.

As one of our visitors points out: ‘First I used Google, now I have a shortcut to dementie.nl on my desktop’.

PO4.26. Care strategies for nutritional care of dementia cases in hospital

YU FEN Lan2, YA HUI Huang1, TZU NI Chen1

1Hospital, Taipei, Taiwan, Province of China, 2Taiwan, Province of China

Introduction: Age was a strongest risk factor for dementia. And higher prevalence rate of dementia resulting in high costs, considerable burden to individuals and society. So, we designed teaching film named「The eating problem and strategy for dementia patients」 include of 6 topics in 2017 for dementia population implemented nutrition health care.

Methods: Apply of nutrition care process (NCP) with International Dietitics & Nutrition Terminology (IDNT) for hospitalized patientl care and group treatment for advanced skills intervention between 2018. 

Result: Total of 59 patients at Taipei City Hospital in 2018,59% female and 41% male;mean±SD age 83.5±8.8,46% soft diet ,19% crumbled soft diet, 20% pureed diet,3% liquid diet and 12% tube feeding. Nutrition problems of most cases were protein-energy inadequate, and difficulty to swallowing was the second nutritional diagnosis. So, we designed additional strategies for further care, include of 1) increase calories density from diet; 2) designed thick liquid diet for dysphagia population; 3) supplied habitual foods and board games about foods for patients and their caregivers.in group activities weekly for modified eating environment.

Discussion: Combined with teaching film, individual consultation and group educations lead to good satisfaction. Adequate fluid intake and sarcopenia, frailty prevention may the next important issue for further home nutrition care.

PO4.27. The viewpoints and demand expectation of severe dementia patients' main caregivers about discharge planning

LIU Tsui-Tao1, CHEN Pei-Pei1, CHEN Shu-Ping2

1Taipei City Hospital, Heping Fuyou Branch, Taipei, Taiwan, Province of China, 2Department of Health, Taipei City Government, Taipei, Taiwan, Province of China

Purpose: Caring for people with dementia has become an urgent issue because of the population of dementia rapid increase in the global. Due to the majority of people with dementia whose family choose to return home to give direct care from family members after discharge, the ability to care and their demand is even more important.

Methods: This study adopts a semi-structured interview for data collection. The convenient sampling and one by one in-depth interview be used. Each participant received 45 minutes interview for once. During the interview process, the researchers observed and recorded the tone, expression, and behavior of the participant. A total of 3 primary caregivers of a severe dementia patient who had lived in the demented ward of our hospital were involved in the study. The content analysis of qualitative research was used and using Atlas ti 5.2 software assisted for data analysis.

Results: The research findings are divided into four themes, namely, "home care services", "sharing the care pressure", "related information provides" and "immediate problem solving". The participant thinks that after returning home from the hospital, it is greatly assisted by the continuous care of medical staff because of home care services. It is often laborious for care dementia patients. If someone supports, it may reduce physical and mental stress. Since most caregivers are not medical professionals, providing adequate information can help them be better prepared to care for the patients. In addition, after returning home, if encounter any problems, they can find the consultant quickly, it would resolve the problem immediately.

Implications for practice: The results of this study can provide relevant medical practitioners with a practical reference for the hospitalization preparation service plan for the family of patients with dementia. It can help them get a good quality of life after returning home.

PO4.28. Caregivers’ burden of people living with dementia: Community-based dementia service in taiwan

SHEN Meng-Zhu, LU Yi-Feng, CHOU Ting-Yun, LIN Wan-Ling, YANG Chi-Cheng, HUANG Sheng-Jean

Taipei City Hospital, Taipei, Taiwan, Province of China

Objectives: Recently, people who live with dementia increases rapidly in Taiwan. Consequently, the amount of the caregivers with heavy stress and burden were easily observed. The purpose of this study is thus understanding the burden of the caregivers whose families living with dementia participated in the community-based dementia service.

Methods: A cross-sectional study with a sample of 41 caregivers from the community-based dementia service of Taipei City Hospital. The Chinese Caregiver Burden Inventory in Dementia was applied to evaluate the burden of caregivers.

Results and Conclusions: The majority of caregivers are female (82.9%). The main type of relationship between the people living with dementia and their caregivers is parent-child relationship (48.8%). The average of caring years is 5.5 years. The mean of total scores of The Chinese Caregiver Burden Inventory in Dementia is 53.9 (SD=14.77). The highest scores of five factors is “time-dependence burden”(M=14.98, SD=2.31), “developmental burden” (M=12.17, SD=5), “social burden”(M=9.83, SD=4.06), “physical burden”(M=9.49, SD=4.70) and “emotional burden”(M=7.49, SD=3.34). In the future, we could supply the community-based dementia service to caregivers with specific type burden, and connect with the community-based grouped program to decrease the burden.

PO4.29. Project "Living better in a world of stimuli - Virtual Reality and Snoezelen as therapeutic tools"

SOBRAL Margarida1, SANTOS Teresa2, ENCARNAÇÃO Rosa2, SALGADINHO Maria José2

1Psychogeriatrics Service, Hospital Magalhães Lemos, Porto, Portugal; Center for Health Technology and Services Research (CINTESIS); Research and Education Unit on Aging (UNIFAI/ICBAS‐UP), University of Porto, Porto, Portugal, 2Psychogeriatrics Service, Hospital Magalhães Lemos, Porto, Portugal

Intoduction: Demographic aging is a reality in Portugal, being expectable that the number of dementia cases also increases. This project will be an innovative response to non-pharmacological interventions for people with dementia (PWD) at different stages using new technologies, namely virtual reality (VR) and through the creation of a Snoezelen room.

Objectives: The purpose of this the project are: a) to improve the quality of life, cognitive and functional performance of PWD in a mild/moderate stage through the use of VR; (b) Adapt spaces in the Psychogeriatric Service, Hospital Magalhães Lemos, to create welcoming environments that meet the needs and capacities of PWD in a moderate/severe stage, such as a Snoezelen room, and contribute to reducing psychological and behavioral changes and improvement of well-being.

Methods: In the pilot study, will be involved 85 PWD (55 participants - Snoezelen intervention; 30 participants - VR intervention). The PWD will be submitted to a pre and post-intervention evaluation: a) Snoezelen: sociodemographic data will be collected and will be applied assessment instruments (Barthel Index, Cohen-Mansfeld Agitation Inventory, Behavior Observation Grid, Clinical Dementia Rating); b) VR: sociodemographic data will be collected and will be applied assessment instruments (Quality of Life Scale, Clinical Dementia Rating, Addenbrooke's Cognitive Examination Revised, Barthel Index, Lawton and Brody Index, Frontal Assessment Battery). The interventions will include 330 Snoezelen sessions lasting 30 minutes, corresponding to 6 sessions for each PWD and 240 RV sessions with duration of 45 minutes, corresponding to 8 sessions for each for each PWD, using 4 virtual environments (city, museum, kitchen and supermarket).

Discussion:The project will enable the implementation of non-pharmacological interventions for PWD (VR and Snoezelen therapy). We intend to improve the quality of life, well-being, cognitive and functional performance of PWD, and reduce psychological and behavioral disorders frequently in the course of dementia.

PO4.30. The activity design of dementia ward

YU SHU-MIN1, LIN NAI-YU2, LIU CHIEN-LIANG3, CHANG Hui-Ping3

1Taipei City Hospital, Heping Fuyou Branch, Taipei, Taiwan, Province of China, 2Taipei City Hospital, Taipei, Taiwan, Province of China, 3Taipei, Taiwan, Province of China

The “people-oriented, family-centered” dementia care model requires cross-team collaboration. Our hospital has established a dementia ward with an interprofessional practice model. The team includes doctor, caregiver, social worker, functional therapist, physiotherapist, speech therapist, pharmacist, and dietician. It is very meaningful for people with dementia to continue to stayactive by participating in the social affairs. Social engagement should not be interrupted by hospitalization. After training and planning, our dementia team members provide group activities for 5 lessons per week, which Coverage family and caregiver psychological support, social resource information provision and assistance application, and nursing skills teaching. We hope to reduce the pressure and burden of the family and caregivers; provide group activities for hospitalized dementia cases. Through case activities, the family could understand the importance of staying active for people with dementia. Before the ward activity, intensive training for dementia volunteers prior to the start of the ward activity. Dementia patients and their families who served 363 times a year were counted; the activity satisfaction is evaluated by the “Dementia ward group activity satisfaction degree” questionnaire: satisfactory, and satisfaction was very satisfactory, reaching 99.7%.

PO4.31. Finding the balance between caregiving in dementia, family and employment: First results of a mixed methods study in Northern Germany

NEUBERT Lydia, GOTTSCHALK Sophie, KÖNIG Hans-Helmut, BRETTSCHNEIDER Christian

University Medical Center Hamburg-Eppendorf, Hamburg, Germany

Background: The rising number of people with dementia (PwD) and women’s increasing labor force participation promote the debate on reconciliation between family life and employment. Employed informal caregivers have to balance the challenges of caregiving, family, and work. However, whether they appraise working as an additional strain or even a counterbalance depends on, inter alia, their own characteristics and their caregiving network. Both aspects have not been considered in research. This mixed methods study aims to explore the reconciliation between caregiving in dementia, family, and employment by considering multiple members of caregiving networks of home-dwelling PwD.

Methods: We used a mixed methods design. By purposive sampling, we included seven caregiving networks of home-dwelling PwD. Narrative interviews of participants were interpreted according to the Documentary Method (QUAL). By completing standardized questionnaires, participants provided data concerning their burden, health, personality traits, self-efficacy and coping skills (quan). Network graphs described their structure and the importance of their members.

Results: QUAL-data describe possible ways of reconciliation (in progress). Either family cohesion or conflicts characterize the different caregiving networks. Furthermore, individuals establish complex strategies to reconcile employment with caregiving, for example by developing time-efficient organizational skills, involving external assistants, or through flexible working arrangements. Quan-data described and enhanced the profiles of included caregivers in this study (n=19). Network data expanded previous findings, which were based only on the main caregivers’ experience by providing insight into a caregiving network from different perspectives.

Conclusions: By considering personal and network-related characteristics of informal caregivers of PwD, we hope to highlight the relevance of these factors in caregivers’ experience of the reconciliation between caregiving in dementia, family, and employment. Results will help to understand how informal caregivers of PwD are seeking to balance these requirements and which interventions can support them to fulfill their important role in dementia caregiving.

PO4.32. Clustering of awareness profiles in people with Alzheimer’s disease

MAYELLE Amandine, ANTOINE Pascal

Univ. Lille, CNRS, UMR 9193 - SCALab - Sciences Cognitives et Sciences Affectives, Lille, France

Objective: The development of centered-person approaches requires taking into account the level of awareness. This level is observed as different over time (e.g. decrease, increase, no change, heterogeneous). However, those observations were made on broad time lapses (i.e. one/two years). There are no information about characteristics of awareness on a daily or weekly perspective. In response to this challenge, this study attempt to observe temporal fluctuations of awareness on a weekly follow-up through inter and intrapersonal variabilities.

Method: 28 people with Alzheimer’s disease (PwAD) had four interviews (one per two week). Each interview was rated with Awareness of Self and Disease Assessment, a measure mixing awareness of self and disease, composed of three subscales: mechanisms, objects and modes of expression. Hierarchical ascending classification were made to obtain profiles of awareness and its potential temporal fluctuations.

Results: Six clusters of awareness were observed, characterized by level of use and adaptation of mechanisms, objects and modes of expression. Cluster 1: High scores for mechanisms and objects, low scores for expressions; Cluster 2: High-middle scores for mechanisms, middle-low scores for objects and expressions; Cluster 3: Low scores for mechanisms and expression, middle-low scores for objects; Cluster 4: High-middle scores for all; Cluster 5: High scores for mechanisms, middle-low for objects, low for expressions; Cluster 6: Low scores for all. These clusters reflected interpersonal variabilities for awareness for one interview. For temporal fluctuations, some PwAD passed between clusters showing increases and decrease of level of awareness with inter- and intrapersonal differences.

Discussion: Awareness is not an all-in-one process. It is variable during one interview and between interviews. Characterized by inter- and intrapersonal variabilities, a subjective approach and more than one interview seem necessary to understand awareness for a PwAD. That is reinforced the necessity of person-centered approaches.

PO4.33. Palliative care of people with advanced frontotemporal and Alzheimer's dementia

FLEISCHHAKER Mareike1, SLAWIK Till1, ROßMEIER Carola1, HARTMANN Julia1, SCHNEIDER-SCHELTE Helga2, TENSIL Maria1, KEHL Victoria3, EGERT-SCHWENDER Silvia4, JOX Ralf5, DIEHL-SCHMID Janine1

1Technical University of Munich, School of Medicine, Department of Psychiatry, Munich, Germany, 2German Alzheimer Association, Berlin, Germany, 3Institut für Medizinische Informatik, Statistik und Epidemiologie Münchner Studienzentrum, Münchner Studienzentrum, Munich, Germany, 4Münchner Studienzentrum, Munich, Germany, 5Geriatric Palliative Care, Department of Medicine, Lausanne University Hospital, Lausanne, Switzerland

Background: One aim of the study EPYLOGE (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) is to compare palliative care of patients with advanced frontotemporal dementia (FTD) and Alzheimer's dementia (AD). Primary focus includes patients' symptoms and caregiver burden.

Methods: As of Dec 31st 2018, from the intended number of 200 patients, 77 with AD and 33 with FTD were enrolled, all of them in advanced dementia stages. 39% of the AD patients and 51% of the FTD patients were cared for at home. During EPYLOGE study visits patients were examined in detail, standardized caregiver interviews were performed and patient files were analysed.

Results: Patients with FTD, who were significantly younger than AD patients, were more mobile and needed slightly less physical care. No differences were observed regarding pain, suffering and quality of life. Patient groups slightly differed regarding neuropsychiatric symptoms: AD patients showed more delusions and hallucinations, FTD-patients showed more disinhibition. Psychotropic drug therapy (antidepressants, antipsychotics, hypnotics) did not differ significantly between AD- und FTD-patients. 42% of the patients were treated with antipsychotics. In 65% of the patients, living wills were available. 42% of the patients had been admitted to hospital in the 12 months before the study visit, the majority to internal medicine and psychiatric wards in order to optimize drug therapy.
 Caregivers’ wellbeing did not differ between FTD- and AD-caregivers as measured by WHO-V score, Beck-Depression Inventory and Caregiver Strain Index.

Conclusion: Current findings show that as AD and FTD progresses, more similarities are seen between patients’ symptoms. High numbers of hospital admissions are observed, which as well known causes additional stress for patients, caregivers and hospital staff. Therefore, future work should focus on reducing excessive hospitalisations, avoiding this stressful measure.

PO4.34. Factors affecting the quality of life of family carers of people with dementia: A meta-analysis

CONTRERAS Milena, MIOSHI Eneida, KISHITA Naoko

University of East Anglia, Norwich, United Kingdom

Background and Objective:  The literature suggests that various factors are related to the Quality of Life (QoL) of family carers of people with dementia (PwD). However, less is known about which factors are more or less significant in influencing change in their QoL. This study aimed to assess the strength of the association between patient- and carer-level factors and carer QoL using meta-analysis.

Research Design and Methods: A literature search of six electronic databases (PubMed, PsycINFO, Scopus, ProQuest, Lilacs and Scielo) was conducted. Inclusion criteria involved studies that reported quantitative data regarding the association between patient/carer-factor and QoL in unpaid family carers of PwD and that were published in English, Spanish, Portuguese or Japanese.

Results: Thirty-three studies were included. The pooled effect size of the correlation between depression and QoL was large (-0.64), while the association effect size for subjective burden (-0.39), care recipient’s QoL (-0.27), care recipient’s neuropsychiatric symptoms (-0.25) and carer’s distress (-0.22) were in the medium range suggesting that depression is the strongest predictor of QoL. The effect size for family Income, carer’s objective burden, age and care recipient’s level of cognitive impairment and independence in activities of daily living were not significant.

Discussion: The findings suggest that depression plays a critical role in maintaining QoL of family carers. Carer interventions that can target multiple outcomes such as depression, burden and neuropsychiatric symptoms seem important for improving carer QoL. However, female participants over fifty years old from western countries predominated in most of the studies included, and thus these results may not be generalized to carers that do not fall into this category. Some predictors that seem to be correlated with QoL, such as anxiety, coping strategies, sleep quality and social skills did not have enough studies to calculate the pooled effect size.

PO4.35. Counselling for relatives and carers of people with dementia

CHRYSIKAKOU Iliana1, ZACHARIADIS Andreas2, EFTHYMIOPOULOU Catherine3

1Psychologist, at the Karelleion Integrated Alzheimer and related disorders Unit, of the “Apostoli” charitable organization, of the Holy Archdiocese of Athens, Greece 2Psychiatrist, Athens, Greece, 3Administrative Director, Athens, Greece

The purpose of this study is to present methods of psychological support, provided to the relatives-carers of persons with dementia. Caring for someone with dementia can be practically and emotionally exhausting. While many caregivers may experience feelings of fullness in helping another person, sometimes, along with this, they may also experience feelings of loss, anger, sadness and guilt. Caregivers struggle with depression and anxiety, at a much higher rate than the general population. Counselling can be very beneficial for helping people who feel exhausted from caring.

There are many services that aim to helping family members, friends and carers, of a person with dementia. It has been proven that the burden is unbearable for these individuals and sometimes they need immediate help and information in order to avoid problems that arise during the provision of care.

Appropriate and contemporary information provided by experienced mental health professionals can help caregivers in comprehending the actual situation and what to expect, as well as allowing them to respond in a useful and practical way to the needs of the person with dementia. Sharing and discussing experiences and situations faced with other caregivers, in a similar situation, can also be helpful.

Furthermore, caregivers often benefit from detailed advice and training on specific skills that may help develop resilience and coping capabilities, allowing for a good quality of life, both for themselves as well as for the person with dementia. This type of support may be necessary during every stage of the course of dementia, depending on individual needs and circumstances, but should always be available when the diagnosis is set and in key areas of care, such as patient admittance to a nursing home.  In these cases, the role of systemic - family therapy or couple therapy may prove out to be very important.

 

 
 

Last Updated: Thursday 26 September 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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