Patient/ Family Involvement

Introduction: Many people with dementia (PwD) are affected by anxiety and depression, leading to significant changes in patient behaviour, carer burden and negative patient outcomes. Anxiolytics and antidepressants are commonly prescribed for PwD and may contribute to potentially inappropriate prescribing. This study aims to explore patients’ and carers’ experiences and perspectives of the management of depression and anxiety in PwD. Methods: An online discussion forum, Talking Point, hosted by the Alzheimer’s Society, was searched for relevant archived threads and posts. These were identified using 64 search terms such as “depression” and “SSRI”. Data were extracted into Microsoft Word and inductive thematic analysis is ongoing to code the data and identify pertinent key themes. Results: In total, 3539 posts were identified from 931 registered forum users. Initial findings have highlighted that anxiety and depression were commonly experienced by PwD and many described the difficulties in differentiating depression from dementia during the early stages of dementia. “Initially my wife was treated for depression and anxiety but that soon changed to MCI [mild cognitive impairment], then dementia…” [TP019]. Forum users described the use of anxiolytic and antidepressant medications as a process of trial and error: “The GP gave her sertraline but that didn’t work so now on mirtazapine. Only been 10 days and really makes her sleep just with half a tablet but now crying again” [TP022]. Frank accounts of the symptoms that PwD experienced were shared, highlighting the impact depression and anxiety has on both patients and their carers. Conclusion: This online discussion forum is a source of rich and valuable data, which may not be accessible through traditional qualitative methods. This study will provide authentic insights on patients’ and carers’ lived experiences of managing anxiety and depression in PwD and will inform further qualitative work with key stakeholders.

Introduction:

Receiving a dementia diagnosis can be overwhelming for persons living with dementia (PLWD) and their carers. Accessing information and home supports can be challenging.  Having access to a Patient Navigation (PN) program is one way that may assist PLWD and their carers.

Methods:

This study used a mixed methods design and involved the implementation of a Patient Navigation (PN) program in 6 primary care settings in New Brunswick, Canada, between July 2022-July 2023. PLWD/carers living in their own homes were eligible to enroll.

Results:

There were 150 PLWD with a mean age of 76.77 (SD = 9.2) years and 51.8% were female. The majority (60.7%) were living in rural communities. Most (53.7%) had been diagnosed within the past 2 years with 50.7% having seen a specialist, most commonly a geriatrician.  Almost all (88.7%) had a primary care provider; however, only 25.2% were connected to the social care system, and 19.8% were connected to the home care system.  The most common reasons for enrolling were gaining access to social programs and home supports and seeking dementia specific information.  The average number of goals per PLWD/carer was 3.77 (SD=1.7). The average time in the program was 116.79 days (SD= 91.08) and 76.6% achieved their goals.  The majority (84.0%) were somewhat to very satisfied with the PN program. Carers stated that with increased knowledge, access, and support there was a decrease in social isolation as well as improved confidence, which allowed PLWD to remain in the community longer.

Conclusions:

Most PLWD/carers were connected to the health system, but the minority were connected to social and home care programs. Through connection to the PN program, carers increased their confidence; improved their knowledge; and increased their access to home supports and other care programs, allowing PLWD to remain in the community longer.

Older Patients’ and Caregivers’ Perceptions of and Attitudes to Deprescribing in Saudi Arabia: A Cross-Sectional Study

T M Alenzy1,2; C Parsons1; H E Barry1; S A Alkahtani3

1.School of Pharmacy, Queen’s University Belfast, Belfast, UK; 2. Department of Clinical Pharmacy, College of Pharmacy, Princess Nourah bint Adulrahman University, Riyadh, Saudi Arabia; 3. Department of Clinical Pharmacy, College of Pharmacy, Najran University, Najran, Saudi Arabia

Introduction: Development of effective deprescribing interventions requires thorough understanding of attitudes of relevant stakeholders involved in the medication decision-making process. This study aimed to examine older patients’ and caregivers’ perspectives on deprescribing in Saudi Arabian hospitals and explored factors influencing their attitudes.

Method: A survey study was conducted using the Revised Patients’ Attitudes Towards Deprescribing (rPATD) questionnaire (Arabic version), which was administered to older patients and caregivers recruited from two hospitals in southern Saudi Arabia through convenience sampling. Participants provided written informed consent and ethical approval was obtained. Descriptive analyses (frequencies and proportions) summarised beliefs about medication inappropriateness, burden, discontinuation concerns, involvement and two global questions. Bivariate analyses examined links between participant characteristics and questionnaire responses.

Results: Questionnaires were completed by 253 participants (126 older patients and 127 caregivers; response rate 87.00%). Most patients were aged 65-69 years (53.17%), married (78.60%), and taking 5-8 medications (65.07%). Almost two-thirds (65.87%) were satisfied with medications, and 88.10% were willing to have them deprescribed. Patients taking 5-8 medications showed significantly greater willingness for deprescribing compared to those taking ≥9 medications (p<0.001). Married patients were more involved in medication decision-making than non-married patients (p<0.05). Most caregivers were aged 25–34 years (38.58%) and married (75.59%). Their care recipients were primarily ≥80 years, with 67.71% taking 5-8 medications. Most caregivers (60.00%) were satisfied with care recipients' medications, and 82.68% were willing to have these deprescribed. Caregivers of care recipients taking ≥9 medications reported greater burden associated with managing medications (p<0.001).

Conclusion: Characteristics such as the number of prescribed medications influenced patients’ and caregivers’ perceptions of medication burden and willingness to have medications deprescribed, while marital status influenced involvement in medication decision-making among patients. These insights may be used to help guide hospital deprescribing interventions. 

Introduction: Community-based care such as adult day services (ADS) are preferred by people with dementia. ADS offers the opportunity to support the health and social needs of their clients and provide respite to family members, contributing to a stable care situation at home. The psychological needs of humans according to the self-determination-theory (SDT) (autonomy, competence, and relatedness) can be fulfilled by leisure activities and thus improve well-being and quality of life. The implementation of leisure activities that reflect individual preferences support active participation, preserve autonomy, improve satisfaction with care and consequently can be understood as a core aspect of person-centered care. However, it is currently unknown how people receiving ADS understand leisure and which leisure activities they prefer.

Method: To gain insight, a qualitative design was chosen. We conducted semi-structure interviews with 15 people receiving ADS in Germany. Participants were recruited from three different ADS in one state in Germany. Interviews were recorded, transcribed verbatim and analyzed using reflexive thematic analysis and categories of the SDT.

Results: The results show that over 90 % of participants were diagnosed with dementia and we identified two different themes. The first theme, the sweet bitter symphony, emphasizes the positive (sweet tones: autonomy, competence, and relatedness) and negative (bitter tones: incompetence, unrelatedness, and heteronomy) sensations and feelings that shape interviewees’ understanding of leisure. The second theme, young, wild & free!, describes the different preferred leisure activities. 

Conclusion: The results indicate the importance of preference-based service design in ADS to meet clients’ psychological needs and thus provide person-centered care to improve well-being and quality of life. These results can be used to develop an item-based assessment tool to assess the preferences of people with care needs regarding leisure activities in ADS.

Introduction

NHS England is committed to the expansion of virtual wards, necessitating patient engagement with home care technology. Literature suggests there is a technology adoption lag among older populations. We investigated if this lag was evident in geriatric virtual ward patients.

Methods

Data from three NHS trusts using a virtual care  platform (March 2021-August 2023) were aggregated to assess differences in perceived ease of use, technology adoption style, and measures of adherence. All patients received the Telehealth Usability Questionnaire Ease of Use (EOU) subsection (higher scores indicate higher EOU). Patients completed surveys via tablet, wore monitoring devices, and took blood pressure readings. We dichotomized age (<75 vs. 75+) and used Fisher’s exact and Wilcoxon-Mann-Whitney tests.

Results

Of 857 patients, 36.9% were geriatric (mean age 81.5 years). The younger group (mean age 59.1 years) had 541 patients. Gender was evenly split between age groups (p=0.62). Median EOU scores were 5.5 (geriatric) and 6.2 (younger) (p<0.001). Geriatric patients were more likely to avoid or delay technology adoption (82% vs. 56% in younger patients, p<0.001). Geriatric patients had higher adherence to the wearable device (median 95.3%) compared to younger patients (93.3%, p<0.001). Blood pressure (median 81.6%) and survey adherence (median 83.3%) did not significantly differ between groups (p=0.076, p=0.0501).

Conclusions

Despite perceptions and literature suggesting older patients are less comfortable with technology, our findings demonstrate high engagement in virtual ward technology. While differences exist in technology adoption and EOU scores, geriatric patients exhibit equal or higher adherence to remote monitoring tasks. These results challenge stereotypes and underscore the importance of incorporating technology in geriatric care.

Background Osteoporosis is a global health concern that is likely to increase with a rapidly ageing world population. It affects one in three women and one in five men over the age of 50. Although there is a large body of qualitative research exploring the experience of living with osteoporosis, far fewer studies have focused on men. We aim to explore the meaning making processes of men with osteoporosis. Methods We interviewed 13 White British men aged 63 to 94 with an osteoporotic vertebral fracture We used the six stages of reflexive thematic analysis: familiarisation with the data; coding ; generating initial themes; developing and reviewing themes through discussion; refining and naming themes; writing up. Results We developed six themes giving insight into the existential losses of men with osteoporosis: there has been a step changed coming; I am no longer what I once was; the change in me is de-meaning; I want to know where I am heading; I want to know why this happened to me; I want to know what’s wrong and how to fix it? We describe moral narratives used in defence of self. Conclusions Our findings highlight the challenge of deciphering the symptoms of osteoporosis and age-related changes. We also see the impact on self and a struggle to repair self. Healthcare providers are in a unique and privileged position to accompany their patients at points of Existential Crisis. As such, they attend to the repair of both identity and body. This comes with an ethical responsibility and has implications for clinical education. Health professionals should feel equipped to be alongside people facing existential losses. Qualitative Research and can give valuable insight into the phenomenology of illness and contribute to improvements in care pathways.

Background: Informal caregivers play a critical role in providing continuous, unpaid care to individuals with dementia, helping to improve their quality of life and reduce the demand on formal care services. The caregiving relationship is a complex, dyadic process that can have profound effects on both the caregiver and the care recipient, underscoring the need to alleviate caregiver burden and support their well-being. Understanding the motivations behind why individuals take on caregiving roles is essential, as it can predict their experiences, perceptions, and the overall impact of caregiving on their lives. A systematic review by Greenwood and Smith identified key motivators for informal caregivers. Additionally, there is substantial evidence that cultural perspectives and social values significantly influence caregiver experiences and motivations.

Methods: This systematic review aimed to update the findings of Greenwood and Smith by examining recent research on the motivations behind caregiving across different demographics, ethnicities, and cultures. Six electronic databases were searched from August 2018 to January 2024. Titles and abstracts were screened using machine learning methods (ASReview), and a subset of full texts underwent duplicate screening. Eligible studies were appraised using the Mixed Methods Appraisal Tool (MMAT), and data were extracted and organized into thematic categories.

Results: The initial search yielded 1,843 articles, of which 37 studies met the inclusion criteria after deduplication and screening. Cultural explanations for caregiving motivations included themes such as familism, ethnic identity, cultural values and beliefs, a sense of obligation, and personal fulfillment.

Discussion: Cultural perceptions and social values play a significant role in shaping caregivers' experiences and perceptions, which in turn influence families’ engagement with and acceptance of formal care and support services. These findings highlight the need for further research to guide the development of culturally sensitive psychosocial support interventions tailored for diverse caregiving populations. Such personalized approaches are essential for reducing caregiver burden and fostering an inclusive caregiving environment that respects the unique motivations and values of caregivers from various cultural backgrounds.

Introduction

As the prevalence of dementia continues to increase across the UK, understanding the lived experience of patients and carers affected by dementia becomes paramount. There is an established dementia pathway in Sussex for people living with dementia (PLWD) and their carers. To improve care and inform future commissioning priorities, the Brighton and Hove Health Watch (BHHW- a community interest company) surveyed the opinions of a group of PLWD and their carers around initial diagnosis and subsequent support.

Methods

PLWD and their carers receiving social support and willing to provide feedback were included in this survey. Using a topic guide, BHHW volunteers conducted a telephone interview with this group exploring their experience with their general practitioner (GP), and the memory assessment service (MAS) in relation to diagnosis, and post-diagnosis support. Transcribed interviews were analysed using qualitative thematic analysis (inductively and deductively) using Braun and Clarke’s method.

Results

Forty-five participants were interviewed, 37 carers and 6 PLWD (average age 78.2 range 64-95 years) between December 2022 and May 2023. Thirty-nine participants (86%) were of white-British ethnicity. Participants reported a range of different experiences with no consistent pattern by age, gender or location. Participants were generally satisfied with the initial GP care they received. The waiting time to access MAS was six weeks on average, an acceptable timeframe for the group. Some participants reported waiting as long as two years since the initial GP consultation before a dementia diagnosis was eventually made. Participants were generally satisfied by the thorough MAS review. Most participants felt that the information material they immediately received after dementia diagnosis was complex and overwhelming. Social support offered post-diagnosis was commendable.

Conclusion

The lived experience of PLWD and their carers in Sussex was generally positive. However, a tailored approach to post-diagnosis information provision is required.

Background

Dementia is a prevalent condition in an ageing population. Persons with dementia and their caregivers are often uncertain about what to expect after an initial diagnosis. Previous studies conducted on the experiences of informal caregivers show a clear demand to address these: providing adequate information, psychosocial support and access to services.

Introduction

The diagnosis of dementia is usually made by specialists in the tertiary hospital. However, resources in acute tertiary hospitals are expensive and valuable. To better allocate resources and improve the manpower situation, we have collaborated with our community partner to provide post diagnosis support (PDS) to patients newly diagnosed with dementia.

Methods

A PDS team consisting of an allied health professional and a caregiver peer is established by our community partner. They conduct home visits to provide psychoeducation to help persons with dementia and their caregivers understand more about dementia, develop personalised care plans, and coordinate support services to provide psychoemotional support.

Close communication is maintained between the PDS team and the acute hospital referral team. Multidisciplinary team meetings involving the geriatricians, nurses, case managers and community partners are also held quarterly to provide regular updates about the progress of the patients and facilitate learning.

Results

A total of 95 persons who were newly diagnosed with dementia in the previous 1.5 years were referred. 53 patients were eventually enrolled under the PDS programme, and received psychoeducation and personalised care plans. 72% were given caregiver support and 66% were linked up to community services. The average duration between date of referral to date of first home visit is 13 days.

Conclusions

In an ageing population where there is high healthcare utilisation, it is efficient to utilise existing services instead of duplicating them. By collaborating with community partners, we are empowering them to play a better role in supporting persons with dementia.

Introduction

Fall-related injuries such as fractures are on the rise as the older adult population grows in New Brunswick, Canada. These injuries can lead to hospitalization and transitions in care that are complicated for patients and families. The objective was to investigate the impact of patient navigators (PNs) working alongside the healthcare team on patient and family experiences, as compared to the usual standard of care (SOC), for adults aged 65 and older admitted with a fracture to an Orthopedic Unit at one hospital in New Brunswick.

Methods

A concurrent embedded mixed methods design, in which the quantitative randomized control trial had an embedded qualitative component. The results for the family caregiver qualitative component, which used an interpretive description approach, are presented.

Results

Semi-structured interviews were conducted and thematically analyzed for 15 family caregivers (8 PN group, 7 SOC group). The SOC caregivers, six women and one man, had a mean age of 64.6 years (SD=6.9 years). The mean age of the 8 women in the PN group was 61.3 years (SD=10.1). All participants in both SOC and PN groups self reported their ethnicity as white. Thematic analysis found that SOC group caregivers discussed patients relying on support from family and friends throughout their care journey, whereas caregivers in the PN group predominantly discussed finding PNs supportive and helpful. Both groups discussed the ongoing stress that they felt throughout the care journey of the patient for which they cared for; however, for the PN group this topic was less prevalent.

Conclusions

This study provides an understanding of the positive impacts a patient navigator can have on older adult inpatient care and transitions in care. Patient Navigators were shown to be helpful to families, particularly those of patients with higher care needs and fewer family supports.