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Integrating community services into primary care: improving the quality of dementia care

Practice Points

Linda Lee*1, Loretta M Hillier2 & David Harvey3 „„ This study assessed the impact of a partnership in which a representative of the Alzheimer’s Society was

embedded as a member of a primary care-based memory clinic. Alzheimer’s Society representatives were involved in various aspects of the assessment and management process. „„ This study demonstrated that this partnership resulted in a fivefold increase in the number of referrals to

the Alzheimer’s Society at the time of diagnosis. Moreover, this partnership was credited with improving care coordination and integration between primary and community care, and enhancing care provider awareness of available community services. „„ With the aging population and the associated increases in the prevalence of dementia, initiatives that

link various sources of expertise in dementia care across health sectors have the potential to significantly improve the system of care for individuals with dementia and their caregivers.

SUMMARY Aim: The purpose of this study was to describe the impact associated with a unique partnership between the Alzheimer’s Society (AS) and primary care-based memory clinics, and in particular to describe the impact on access to community-based services, the role of the AS in these clinics and to identify key lessons learned in partnership formation. Participants & methods: A total of 35  memory clinic healthcare providers and nine AS representatives completed a survey assessing the impacts of this partnership, and 25 memory clinic members and 11 AS representatives were interviewed regarding the implementation and outcomes of this partnership. The number of referrals to the AS from the participating primary care settings in the 6 months prior to and following the formation of this partnership were collected. Results: There was a fivefold increase in referrals to the AS in the 6 months following the launch of this partnership. Other identified impacts included improved care integration and coordination across community and primary care sectors, improved access to information and community supports at the time of diagnosis, and increased healthcare provider awareness of available community services. AS representatives assumed various roles in the clinic depending on available resources and existing gaps. Some key lessons were learnt in order to support the implementation of this partnership in other jurisdictions. Conclusion: This partnership was perceived as a significant quality improvement opportunity Centre for Family Medicine Family Health Team, Faculty of Medicine, Department of Family Medicine, McMaster University, 10B Victoria Street South, Kitchener, ON, N2G 1C5, Canada 2 Specialized Geriatric Services, St Joseph’s Health Care London, Aging, Rehabilitation & Geriatric Care Research Centre, Lawson Health Research Institute, 801 Commissioners Road, East London, ON, N6C 5J1, Canada 3 Alzheimer’s Society of Ontario, 20 Eglinton Avenue West, Suite 1600, Toronto, ON, M4R 1K8, Canada *Author for correspondence: Tel.: +1 519 783 0023; Fax: +1 519 783 0033; [email protected] 1

10.2217/NMT.13.72 © 2014 Future Medicine Ltd

Neurodegen. Dis. Manage. (2014) 4(1), 11–21

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RESEARCH ARTICLE  Lee, Hillier & Harvey to better meet the needs of individuals with dementia and their caregivers, and highlights the importance of the integration of community agencies in primary care to improve access to community services. Family caregivers of individuals with dementia experience high levels of caregiver stress and burden as they usually provide care with minimal external supports [1]; this caregiving has been associated with physical illness, psychological distress and financial burden [2,3]. Although community-based resources and services (e.g., education, adult day programs, support groups and respite) can mitigate the negative impacts associated with the caregiving role [4,5], caregivers of individuals with dementia tend to use fewer available community supports than caregivers of individuals with other chronic diseases [6], and when they do access available supports and services, they tend to do so when overwhelmed and unable to cope, most commonly when in crisis or late in the disease process [5,7]. There are probably many reasons for this, including stigma, receipt of diagnosis late in the disease process and lack of awareness of available support services [7,8]. Contributing to the caregivers’ limited knowledge of available community supports is the lack of information provided by their primary care providers. Several studies have found that physicians’ knowledge of and referral to local support services is limited [3,9–11]. One study found that family caregivers perceived their physicians as limited in their ability to assist them with nonmedical and psychosocial issues, particularly when related to relevant support services, while physicians perceived themselves as most able to diagnosis dementia and less able to deal with family issues related to counseling and nursing home placement [12]. There is much support for greater interagency integration and partnerships to improve dementia care within the community [7,13]. Canadian dementia guidelines [14,15] have consistently recommended referrals to support organizations such as the Alzheimer’s Society (AS) and community-based agencies for home care, day programs, behavior management and caregiver support. AS and primary care partnerships have been identified as a potential opportunity to improve the quality of dementia care by ensuring the patient’s access to counseling and education [16]. The AS is a logical partner for primary care owing to the important role they play in providing education and information about dementia

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and available community services. Of particular relevance is First LinkTM (AS, CA, USA), a program from the AS aimed at improving access to programs offered by the society as well as other community services by encouraging family physicians to refer patients directly to the AS. Referrals at the time of diagnosis can improve care and outcomes, and ensure that supports are in place for persons with dementia and their caregivers throughout the disease process [17,18]. Patients tend to be connected with the AS sooner after diagnosis when they are referred directly by their physicians than when they are left to make the connection themselves [19]. Given that nonpharmacological interventions are the mainstay of dementia management and that the AS is a recognized resource, physicians have been encouraged to refer patients and family members at the time of diagnosis to improve care and outcomes [17]. However, despite a huge effort from the First Link programs, physician engagement remains a challenge; in some areas direct referrals from family physicians to the AS remain very low [19,20]. Embedding representatives from the AS within primary care-based memory clinics is a potential opportunity to promote early access to support services. Primary care-based memory clinics are a relatively new phenomenon in ON, Canada. First established in 2008, within the Centre for Family Medicine Family Health Team (FHT), in Kitchener (ON, Canada), interprofessional primary care-based memory clinics were viewed as an opportunity to provide patients with a comprehensive multidisciplinary assessment and a shared care and evidence-based approach to management to support timely access to quality dementia care [18]. With the success of this model of care, a training program was developed to improve the detection and management of dementia in other primary care settings through the development of self-sustaining memory clinics [21,22]. To date, over 35 memory clinics have been established within primary care settings in ON following this specialized interprofessional training, supporting over 475 practices with a patient base of over 700,000 individuals [21,22]. These memory clinics are led by trained family physicians and, as a minimum, include registered nurses and practical nurses, but have

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Integrating community services into primary care: improving the quality of dementia care  also included nurse practitioners, social workers, occupational therapists and pharmacists depending on the resources that are available. A detailed description of these clinics is provided elsewhere [18]. In the implementation of these new clinics, the need to improve links with communitybased services and supports became increasingly evident. Partnerships between the memory clinics and the local AS arose in which representatives of the Society formally became memory clinic team members, participated in training alongside their memory clinic colleagues and assumed various roles in the assessment and management of patients. There is support for AS involvement in memory clinics located in specialized psychiatry services, in which it has been described as an essential component of the service, particularly when related to the AS’s role in linking patients and families to community services and advocating for optimal dementia care within the given system [23]. The purpose of this study was to describe the role of the AS in primary care-based (FHTbased) memory clinics, to identify the impacts of this partnership for patients and caregivers, particularly their access to community-based supports and services, healthcare providers and the health system, and to identify key lessons learned in the development and implementation of this partnership. Participants & methods A mixed method (qualitative and quantitative), pre–post study design (comparison of referrals from FHTs to the AS prior to and following AS involvement in the memory clinics) approach was used in this study. This study was approved by the Research Ethics Board, McMaster University (ON, Canada). All 78 individuals who completed the memory clinic training program across three consecutive training sessions held in April 2011 (n = 29), September 2011 (n = 22) and March 2012 (n = 27), resulting in the establishment of memory clinics within 11 FHTs located in central and southwestern ON, were invited to participate in this study; this included 14 representatives from the AS and 64 health professionals. These new memory clinics provided service to a total of 130 family physician practices, with a combined family practice patient base of 179,354 individuals. The participants’ memory clinics varied in terms of their composition depending on

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RESEARCH ARTICLE

available resources; as a minimum, each clinic had at least one family physician (range: 1–3), one nurse (range: 1–2) and at least one representative from the local AS (range: 1–2). Other team members included social workers (eight clinics had at least one social worker), a pharmacist (three clinics) and an occupational therapist (two clinics). AS representatives had varied academic training, including nursing, social work and gerontology. All of the clinics operated 1 day per month, with some occasionally operating the clinic an extra half or 1 day per month in order to expedite an increase in referrals. „„ Referrals to the AS

Local AS societies serving the geographical region in which the memory clinics were located were asked to identify the number of direct referrals made by health professionals from the memory clinics’ FHTs in the 6 months prior to the launch of the newly established clinics and in the 6 months following the launch of the clinics. These data were gathered from the internal AS information system as the referral source is one of the pieces of information collected on new clients. „„ Memory clinic implementation survey

In the 6 months following completion of the training program, all participants (n = 78) were invited to complete an online survey to assess outcomes associated with the program, namely the implementation of their newly established memory clinic. This survey was developed as part of a training program evaluation study [22] and was modified to include questions relevant to this study. This included outcomes related to the usefulness of having a representative of the AS as a member of the clinic (rated using a five-point rating scale: 1: not at all useful; 5: extremely useful), satisfaction with the role that the AS plays within the clinic (five-point rating scale: 1: not at all satisfied; 5: extremely satisfied), and impact of this partnership on access to information about dementia, community supports, support groups, respite, care coordination, health provider awareness of community supports and reduced burden of care for health providers (all rated as not sure, negative impact, no impact or positive impact). „„ Memory clinic team interviews

In the 8 months following the establishment of their clinics, all memory clinic team members

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RESEARCH ARTICLE  Lee, Hillier & Harvey Table 1. Participant and practice setting characteristics. Characteristics

Results

FHT (n = 9) practice setting characteristics; mean ± SD (range) Medical practices within the FHT Combined patient base

11.6 ± 6.6 (6–28) 15,549.3 ± 10,267.8 (6000–38,000)

Survey respondents’ discipline (n = 44); n (%) Physician Nurse practitioner Registered nurse/registered practical nurse Social worker Occupational therapist Pharmacist Other†

14 (31.8) 5 (11.4) 8 (18.2) 8 (18.2) 2 (4.5) 3 (6.8) 2 (4.5)

Survey respondents’ practice setting characteristics (n = 11); mean ± SD (range) Medical practices within the FHT Combined patient base

11.8 ± 6.2 (6–28) 16,304.9 ± 9392.6 (6000–38,000)

Interview participants’ discipline (n = 36); n (%) Physician Nurse practitioner Registered nurse/registered practical nurse Social worker Occupational therapist Administrator Alzheimer’s Society representative

5 (13.9) 2 (5.6) 9 (25.0) 5 (13.9) 2 (5.6) 2 (5.6) 11 (30.6)

Interview participants’ practice setting characteristics (n = 9); mean ± SD (range) Medical practices within the FHT Combined patient base

12.4 ± 6.7 (6–28) 17,801.1 ± 9817.3 (6000–38,000)

Percentages may not sum to 100% due to missing data. † Other disciplines: dietitian and psychogeriatric resource consultant. FHT: Family Health Team; SD: Standard deviation.

(n = 78) were invited to participate in individual telephone interviews, the purpose of which was to describe the role of the AS representative within the clinics, assess the impacts associated with having the AS as a memory clinic partner and identify key lessons learned in the development and implementation of this partnership. Specific interview questions included: what role does the AS play in the memory clinic? In what ways do patients, caregivers, health providers and the health system benefit from the partnership between the AS and your memory clinic, above and beyond the benefits that would exist if your memory clinic simply referred to patients to the AS (i.e., what is the value added to having AS representation in your clinic)? What do you think are some of the key lessons learned in the partnership between the AS and the memory clinic (including facilitating factors, challenges, suggestions for improving and sustaining this partnership)?

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„„ Data analysis

Survey data were analyzed using SPSS software (SPSS Inc, IL, USA). Frequencies were generated for each Likert scale response category, and mean scores and standard deviations were calculated for numerical rating scale responses. Differences in survey ratings between memory clinic health professionals and AS representatives were explored, as appropriate, using c2, t-tests and analysis of variance. All of the interviews were digitally recorded and transcribed. Transcriptions were analyzed using a qualitative naturalistic inquiry approach [24]. Inductive analysis was used to identify reoccurring themes in the data without prior assumptions [25]. Results „„ Response rates

Data on referrals to the AS were available for nine of the 11 FHT memory clinics; the practice characteristics of these clinics are presented in Table 1. These data were not available for two of the FHTs because the launch of one of the memory clinics was coincident with the opening of the FHT so ‘predata’ were not available and because one AS society was unable to collect these data. A total of 44 training program participants (35 memory clinic health providers and nine AS representatives), representing each of the 11 newly established memory clinics, completed the postprogram training survey (56.4% response rate); there were no significant differences in ratings between health professionals and AS representatives, so results are presented across all participants. In total, 36 individuals (25 memory clinic health providers and 11 AS representatives) completed an interview (46.2% response rate), which averaged 22 min in length (±6.2), with a range of 10–40 min. Interview participants represented nine of the 11 newly established memory clinics; none of the team members from two of the memory clinics volunteered to participate in the interview component of this study. The disciplines and practice characteristics of survey respondents and interview participants are presented in Table 1. „„ Role of the AS within the memory clinics

As described by interview participants, the role of the AS representative varied within each memory clinic, dependent on what resources were currently available within the clinic and what gaps existed that the AS was able to fill. This role was negotiated collaboratively with the

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Integrating community services into primary care: improving the quality of dementia care 

RESEARCH ARTICLE

Box 1. Roles of the Alzheimer’s Society within the memory clinics. Clinic activities with patients & caregivers ƒƒ Community service planning ƒƒ Review of Alzheimer’s Society services and programs ƒƒ Facilitation of access to community services ƒƒ Follow-up contact: home visit and telephone monitoring Team activities ƒƒ For patients already linked with the Alzheimer Society: information sharing with the memory clinic team regarding key issues experienced by families and Alzheimer Society and community services/resources accessed to date ƒƒ Contribution to the assessment process† ƒƒ Information gathering to support diagnosis and care planning ƒƒ Administration of standardized tools to assess cognitive functioning, functional status, depression, caregiver stress and others as needed (risk assessment and behavior inventory) ƒƒ Capacity building (information and education) on dementia, Alzheimer’s disease and the psychosocial context of dementia By Alzheimer’s Society staff who are registered nurses or social workers; in six memory clinics where there were limited human resources. †

clinics and, in many cases, evolved as the knowledge and skill set of the AS representatives and as gaps in service were elucidated. The various roles assumed by AS representatives within the memory clinics are summarized in Box 1. „„ Impacts associated with the memory

clinic–AS partnership Table 2 shows the dramatic increase in the num-

ber of direct referrals to the AS from the memory clinic FHTs in the 6 months following the launch of the memory clinics, with a percentage increase ranging from 100 to over 1000%. The number of referrals to the AS from each FHT ranged from zero to ten prior to the launch of the memory clinics, and increased from ten to 35 following the launch of the clinics; this represents a fivefold increase in the total number of referrals across all sites (from 20 to 126 following the launch of the clinics). Mean ratings reflected that memory clinic implementation survey respondents found having AS representation within the clinic team to be extremely useful (mean: 4.7; standard deviation: 0.54) and were extremely satisfied (mean: 4.7; standard deviation: 0.60) with the role that the AS played within the clinic. A high percentage of respondents (>84%) indicated positive impacts of this partnership for patients and caregivers, most frequently on their ability to cope with dementia, early access to information about dementia and community supports, access to peer support and respite, and health provider awareness of community supports and care coordination (Table  3). Similarly, a high

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percentage (73–82%) of respondents indicated that this partnership has had a positive impact on health provider access to assessment information, awareness of strategies for managing dementia and on reducing the burden of care for health providers. Generally, few respondents (

Integrating community services into primary care: improving the quality of dementia care.

The purpose of this study was to describe the impact associated with a unique partnership between the Alzheimer's Society (AS) and primary care-based ...
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