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Aide memoire: What should a memory clinic or a memory assessment service look like?

Published online by Cambridge University Press:  24 November 2016

T. O’Carroll*
Affiliation:
Department of Psychiatry of Later Life, St Patrick’s University Hospital, Dublin, Ireland
K. Glynn
Affiliation:
Department of Psychiatry of Later Life, St Patrick’s University Hospital, Dublin, Ireland
D. Lyons
Affiliation:
Department of Psychiatry of Later Life, St Patrick’s University Hospital, Dublin, Ireland
K. Looney
Affiliation:
Department of Psychiatry of Later Life, St Patrick’s University Hospital, Dublin, Ireland
*
*Address for correspondence: Dr T. O’Carroll, Department of Psychiatry of Later Life, St Patrick’s University Hospital, PO Box 136, James’s Street, Dublin 8, Ireland. (Email: ocarrolt@tcd.ie)
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Abstract

With the global ageing of our societies and the predicted increase of cognitive impairment and dementia, there is increasing interest in the role and scope of memory clinics or memory assessment services in the early assessment, diagnosis and management of all subtypes of dementia. Memory clinics generally attempt to provide a multidisciplinary approach to the diagnosis and treatment of memory impairment and dementia. However, little consensus exists about the profile or complement of staff that would constitute an ideal memory clinic, and services vary widely in terms of their organisation, remit and functioning. The purpose of this article is to highlight the variation amongst the existing complement of memory clinics in Ireland. The 17 models are compared in terms of their core multidisciplinary service and services available on referral. The Irish National Dementia Strategy recommends a well-coordinated service that provides early diagnosis and treatment, and one with good links to local support agencies. However, many of the services in Ireland lack input from relevant allied health professionals. This article also focusses on one privately funded memory clinic in Ireland which aims to bridge the gap between accurate diagnosis, holistic assessment and follow-up through comprehensive multidisciplinary input. The challenges facing this service are discussed, with particular reference to the difficulties encountered when providing community follow-up by a private sector clinic.

Type
Perspective Piece
Copyright
© College of Psychiatrists of Ireland 2016 

Introduction

With the global ageing of our societies and the predicted increase of cognitive impairment and dementia, there is increasing interest in the role and scope of memory clinics or memory assessment services in the early assessment, diagnosis and management of all subtypes of dementia. Recent figures suggest that by 2041, 1.4 million people in the Republic of Ireland (22% of the population) will be aged 65 and older (Central Statistics Office Ireland, 2013). The population of the ‘very old’ over 80 age group is also set to rise over three-fold from 128 000 in 2011 to 470 000 by 2046 (Central Statistics Office Ireland, 2013). Older age is the primary risk factor for Alzheimer’s disease, with about a third of the population over the age of 85 experiencing symptoms of this disease (Herbert et al. Reference Herbert, Weuve, Scherr and Evans2013). The prevalence of other dementias also increases with age, and it is therefore important to factor our ageing population into providing services relating to the diagnosis and treatment of memory problems and dementias. Forecasts predict the population of people with dementia in Ireland will increase from an estimated 48 000 in 2011 to 132 000 by 2041 (Pierce et al. Reference Pierce, Cahill and O’Shea2014).

The evolution of memory assessment services has attracted political attention with formal dementia strategies and service plans being rolled out at national and EU levels, highlighting the contribution that memory clinics can make to the diagnosis and treatment of dementia symptoms (The Irish National Dementia Strategy 2014; National Dementia Strategy for England 2009; National Dementia Action Plan for Wales 2009; Department of Health, United Kingdom 2009; Welsh Assembly Government 2009). Memory clinics vary widely however within and across many jurisdictions in terms of their remit (e.g. diagnosis only or diagnosis and treat services) and functioning, with many being the initiative of individual specialists. At least half of the memory clinics across the Republic of Ireland have input from Old Age Psychiatrists (Cahill et al. Reference Cahill, Pierce and Moore2014) with some services focussing on a purely diagnostic function and, as is seen elsewhere, leaving other critical areas such as needs assessment, case management and treatment of non-cognitive and behavioural disturbances in dementia to community mental health healthcare teams (Heeren, Reference Heeren2005). This article will highlight the variation amongst the existing complement of memory clinics in Ireland and describe a private sector initiative which aims to bridge the gap between accurate diagnosis, holistic assessment and follow-up through comprehensive multidisciplinary input.

Background

The early development of memory clinics in the United States and the United Kingdom was driven by a recognition over the last two decades that new pharmacological and psychosocial approaches to the management of early stage dementia in particular, had the potential to subdue the previous sense of therapeutic nihilism that surrounded the detection, subtype diagnosis and disclosure of dementia. Many early clinics were hospital-based assessment and advice services linked to research projects however, and were ill-equipped to provide for the ongoing care needs of their patients, relying instead on referral to local health and social services for the delivery of important psychosocial interventions (Wright & Lindesay, Reference Wright and Lindesay1995). The licensing of treatments in the late 1990s to alleviate some of the symptoms of Alzheimer’s disease had a significant impact on the further development of memory clinics, with many services being specifically established to ensure delivery of treatment with acetylcholinesterase inhibitor therapies. Consequently, Lindesay et al. (Reference Lindesay, Marudkar, van Diepen and Wilcock2002) found that the number of memory clinics in the United Kingdom had doubled by 2000, with many operating broader service models, with non-pharmacological treatments and the active support and counselling of patients and their supporters being integral to their repertoire of available therapies. The English National Dementia Strategy was developed in 2009. Building on this, recommendations were made in 2012 that memory clinics would be established in all parts of the country, and that GPs and other health professionals would make patients aged 65 and older aware of these services and refer those in need of assessment Department of Health England (2012). According to an audit report in 2015, there was an estimated 222 memory clinics in England (Royal College of Psychiatrists, 2015). In the Netherlands memory clinics are well established and have led to the development of quality indicators to facilitate comparison of activities and assessment of quality standards. Most Dutch memory clinics are led by neurologists and geriatricians and actively involve the general practictioner (Ramakers & Verhey, Reference Ramakers and Verhey2011). Psychosocial interventions and their implementation in dementia management (such as sharing diagnosis, education and imparting of information, cognitive rehabilitation and stimulation techniques) call for a wide-ranging multidisciplinary input both in terms of personnel and tailored psychosocial activities for which there is an increasingly robust evidence base (Moniz-Cook et al. Reference Moniz-Cook, Gibson, Harrison and Wilkinson2009).

Models of multidisciplinary services in England vary greatly from the Cambridge Memory Clinic which utilises separate, comprehensive but time-consuming assessments for each patient from the disciplines of neurology, neuropsychiatry and neuropsychology followed by a consensus meeting on the same day (Hodges et al. Reference Hodges, Berrios and Breen2000), to the Croydon Memory Service which offers a generic model of service delivery less reliant on medical specialist input (Banerjee et al. Reference Banerjee, Willis, Matthews, Contell, Chan and Murray2007). Little consensus exists however about the profile or complement of staff that would constitute an ideal or an optimally effective memory assessment service despite the existence of bodies such as the Memory Services National Accreditation Programme (MSNAP) in the United Kingdom. The MSNAP states that the minimum staffing resources for a memory service are an appropriately skilled and qualified medical practitioner and a multidisciplinary team consisting of at least two other professions drawn from mental health nursing, clinical psychology/neuropsychology or occupational therapy (MSNAP, 2012). Additional resources that memory services should have access to (according to these standards) include speech and language therapy, clinical nutrition, physiotherapy, social work, geriatric medicine, neurology, old age psychiatry and community nursing. This is against a backdrop of research which alludes to high levels of client and caregiver satisfaction with memory services that incorporate multidisciplinary assessment and that take the time to sensitively explain diagnostic and management options (Foreman et al. Reference Foreman, Gardner and Davis2004), such services potentially offering quality, comprehensive care at no extra cost to traditional secondary care (Rubinsztein et al. Reference Rubinsztein, van Rensburg, Al-Salihy, Girling, Lafortune, Radhakrishnan and Brayne2015).

Services in Ireland

Ireland’s first memory clinic was established in St James’s Hospital Dublin in 1991 and there are currently 17 memory clinics operating in the Republic of Ireland (DSIDC, 2014) (Fig. 1). The profile of memory clinics in Ireland was surveyed by Cahill et al. (Reference Cahill, Pierce and Moore2014) in a comprehensive review of the location, resourcing, staff composition, wait times and numbers attending such services. Based on data obtained in 2011 (when the then complement of 14 memory clinics was surveyed), it was notable that the majority were led by medical consultants (Old Age Psychiatrists or Geriatricians) with significant nursing presence, but only six of the 14 employed any allied health professionals (including neuropsychologists, social workers and occupational therapists). The relative absence of allied health professional staff could imply significant limitation in the breadth and scope of a memory clinic assessment with a resultant over-emphasis on pharmacological therapies alone. The delay in, or failure to have access to, neuropsychological evaluation, in particular, may additionally compromise the accuracy of diagnosis of the dementia subtype and is of concern. The geographical location of memory clinics that have evolved appears highly arbitrary with some areas in rural Ireland having no specialist services despite high prevalences of known dementia cases (~2000 per county) in areas such as Kerry, Donegal and Galway (DSIDC, 2014). The Irish National Dementia Strategy document launched in 2014 however acknowledges the role of memory clinic resources in assisting in the timely diagnosis and intervention in relation to dementia care and undertakes to clarify and integrate referral pathways to these services with primary care (Department of Health, 2014). Less than half the clinics surveyed in 2011were active in conducting research (Cahill et al. Reference Cahill, Pierce and Moore2014).

St Patrick’s Mental Health Services (SPMHS): memory clinic, a private sector initiative

The memory clinic at SPMHS is one of four ‘not for profit’ memory clinics operating in the Republic of Ireland. Its initial establishment in 2003 drew impetus from the availability of expertise in neuropsychological assessment and the service operated according to the ‘Cambridge model’ single-day assessment principles, which is a labour intensive process but one that offers the integration of the disciplines of neurology, neuropsychology and psychiatry with their individual specialist expertise to yield a comprehensive evaluation (Hodges et al. Reference Hodges, Berrios and Breen2000). Staffing changes necessitated a review of the single-day assessment however and a move to an elective inpatient admission over 2–3 working days. The move to an inpatient mode of assessment avoided direct cost to the patient, with privately funded health insurance paying for the entire evaluation, including pre-arranged magnetic resonance imaging neuroimaging in advance of the admission in many cases. Anecdotally the elective inpatient assessment option is largely acceptable to most patients although an explanatory phone call outlining the process and the advantages of an unhurried, comprehensive approach to the consultation generally eases concerns.

Over 80% of referrals to the memory clinic are made by general practitioners. The remaining referrals arise from sources within St Patrick’s Hospital or external sources including psychiatrists, neurologists and occupational health. The central tenet of the assessment is neuropsychological profiling of all patients with an occupational therapy led functional assessment of life-relevant skills and tasks when necessary. An occupational therapy evaluation revealing functional deficits or strengths can be useful in the discrimination between mild cognitive impairment and Alzheimer’s disease (Schaber, Reference Schaber2010). The advantages of an inpatient diagnostic process include the benefit of time to review and collate basic investigations (reversible dementia screen) and to assess the physical health of the patient, the ability to observe mood and behavioural symptoms, to collect collateral history and for a multidisciplinary survey of the relevant social and psychological aspects of the case in an multidisciplinary team meeting. Demanding neuropsychological testing can be broken up into several shorter sessions to minimise the effects of fatigue and anxiety and optimise test performance. The range of disciplines which participate in this meeting are outlined in Table 1. Observation of the individual in an unfamiliar setting such as a hospital ward may reveal disorientation, this information being of diagnostic value as it can frequently indicate the presence of dementia (Thornhill, Reference Thornhill2011).

Table 1 Staff profile of St Patrick’s Mental Health Services memory clinic

MDT, multidisciplinary team.

Patients admitted for memory assessment have additionally the option to extend the assessment (for 5 days) to obtain liaison-consultation/specialist input from neurology or general medicine. Extension to the original stay has also proved necessary after discussion, in the context of a comorbid difficulty with mood or alcohol. Patients also have access to the general facilities on the St Patrick’s campus as well as day leave and unrestricted movement within the hospital where appropriate. Feedback is provided a week after the initial assessment when the patient and caregivers are invited to attend a feedback meeting at which issues discussed include diagnosis, management, follow-up arrangements and relevant community services. This may include discussion regarding recommendations for further investigations to assist in dementia subtyping such as FDG-PET scanning which is infrequently undertaken but cerebrospinal fluid biomarker studies would be conducted at the discretion of a consultant neurologist in a general hospital setting. A comprehensive report issued to the referrer covers the consensus opinion around diagnosis, aspects of the treatment plan and a detailed account of issues discussed at the feedback meeting, with particular focus on how much information has been disclosed about diagnosis and the exact terminology that was communicated to the patient and their supporters. Following the feedback meeting, specific interventions such as caregiver support and education, cognitive remediation strategies and external agency referrals would be pursued by individual clinicians, with follow through of the overall treatment plan being medically coordinated at consultant-led outpatient reviews.

Preliminary data from an audit of 172 referrals in terms of age and initial diagnostic outcome are highlighted in Table 2. This number underestimates the number of actual assessments undertaken from 2003 to 2015 by up to 20%, as a significant proportion of the 172 referrals would have been reassessed in situations of diagnostic uncertainty or for patients who were in the category of mild cognitive impairment which required repeat re-profiling of memory and cognitive ability to detect progression to dementia or monitor stability over time.

Table 2 Percentages of primary diagnoses in St Patrick’s Mental Health Services (172 referrals)

Research relationships since inception of the memory clinic been forged with the Trinity College Institute of Neuroscience and more latterly with Dublin City University in relation to recruitment of subjects with mild cognitive impairment.

Future challenges for the SPMHS memory clinic

The theme of multi-professional collaborative evaluation has been a cornerstone of the St Patrick’s memory clinic since its inception. The challenge for a privately funded service is to offer an equally comprehensive range of supports and services in the community including the option of the labour intensive but valuable domiciliary assessment. At present, community follow-up of memory clinic patients is consultant led and conducted through a general old age psychiatry clinic rather than a specialist cognitive clinic which would seem preferable. Persuading private health insurers to pay for outpatient services has been extremely challenging in a fiscally constrained healthcare environment where the recent economic downturn saw large numbers of people vacate private health insurance in the Republic of Ireland (Culliton, Reference Culliton2014). Memory assessment services by their very nature are resource-intensive, and balancing the need for holistic yet meticulous assessment with an increasing demand for services in the face of greater patient and clinician awareness, will remain problematic. New populations such as those with persisting depressive symptoms and cognitive deficits are also increasingly likely to require neuropsychological review with potential implications for ever-expanding waiting lists. The increased prevalence of obesity in older adults which is associated with increased risk of ill health such as metabolic and cardiovascular disease could also place an increasing burden on cognitive diagnostic services in the future (Leahy et al. Reference Leahy, Nolan, O’ Connell and Kenny2014).

The resource intensive nature of memory clinics is a particular challenge in Ireland, which has a complicated mix of privately and publicly funded health services. Whilst the current paper focusses primarily on a privately funded model, further research is needed into examine different methods of funding within the public system and how these can be optimised to maintain high-quality services across the board. Whether equity of access to a timely diagnosis or the quality of the assessment obtained relates to the ability to pay for a comprehensive memory and cognitive evaluation also remains to be seen. This raises the issue of a two-tier service and the challenge of integrating services irrespective of their funding model, avoiding fragmentation and duplication of effort and service. These issues will become increasingly salient in the future given Ireland’s ageing population and a lower uptake of private health insurance as noted above. While a detailed discussion of these topics is beyond the scope of the current paper, it is clearly an important area for further research and ongoing debate.

The heterogeneity of memory assessment services in Ireland as evidenced by Cahill’s survey (2014) may at first glance appear to denote a severely fragmented service and imply a deficit in systems thinking in a relatively small geographic space, yet it also acknowledges that there is a place for memory clinics even within many adult (non-geriatric) facilities such as intellectual disability and adult psychiatric services. It is clear that more standardisation and integration of memory assessment services, both between the private and public sector, and within the public sector itself, would be beneficial. The future arrival of disease modifying therapies and more sophisticated investigative methods may well turn out to provide the greatest impetus for greater standardisation and joining up of memory assessment services along more clearly defined investigative and therapeutic pathways.

Fig. 1 Staffing resources in memory clinics in Ireland. Source: DSIDC (2014).

Acknowledgements

The authors thank Prisca Coleman, Claire Hennigan and Grainne Dempsey for their contribution to the running of, and participation in, the memory clinic and associated services.

Financial Standards

This article received no specific grant from any funding agency, commercial or not-for-profit sectors.

Conflicts of Interest

None.

Ethical Standards

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committee on human experimentation with the Helsinki Declaration of 1975, as revised in 2008. The authors assert that ethical approval for publication of this report was not required by their local REC.

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Figure 0

Table 1 Staff profile of St Patrick’s Mental Health Services memory clinic

Figure 1

Table 2 Percentages of primary diagnoses in St Patrick’s Mental Health Services (172 referrals)

Figure 2

Fig. 1 Staffing resources in memory clinics in Ireland. Source: DSIDC (2014).