Personalised psychosocial supports for people with dementia in the community: Learning from Ireland May 2019 Dr Fiona Keogh

Overview Definitions – so we understand what we are talking about and so we can start to think about things differently Evidence Providing personalised psychosocial supports What we’ve learned

Definition – Psychosocial interventions Physical, cognitive or social activities that may maintain or improve functioning, interpersonal relationships and well-being in people with dementia (Moniz-Cook et al 2011) Interventions such as exercise programmes, cognitive rehabilitation programmes, cognitive stimulation programmes etc. does not include other interventions which might have benefits such as environmental design PIs do not involve the use of medication although they can be used in conjunction with medication

NICE guidelines… dementia 1.4 Interventions to promote cognition, independence and wellbeing 1.4.1 Offer a range of activities to promote wellbeing that are tailored to the person's preferences. 1.4.2 Offer group cognitive stimulation therapy (CST) to people living with mild to moderate dementia. 1.4.3 Consider group reminiscence therapy for people living with mild to moderate dementia. 1.4.4 Consider cognitive rehabilitation (CRT) or occupational therapy to support functional ability in people living with mild to moderate dementia. Do Not Offer: acupuncture to treat dementia. ginseng, vitamin E supplements, or herbal formulations to treat dementia. cognitive training to treat mild to moderate Alzheimer's disease. interpersonal therapy to treat the cognitive symptoms of mild to moderate Alzheimer's disease.

Evidence

Lack of classification framework for PIs Who is the target? - person, carer, both? What outcomes should we measure? What stage of dementia? What setting – own home, nursing home? Mode of delivery – individual or group? Type of therapist/instructor? What is it? when does ‘going to the art gallery/theatre/exercise class become a psychosocial intervention instead of just ‘something you like to do’?

Why psychosocial supports? Evidence is accumulating for benefits Something to offer in the absence of effective treatments Supported by policy nationally (National Dementia Strategy) and internationally (WHO Global Action Plan on Dementia) However – use remains low Maybe we need to ‘broaden our thinking’?

Definition – Personalised support or care Input from person and carer – involved in the design of the support Wider range of services – including those from outside the health sector Tailoring based on needs and preferences Focus on strengths and abilities Care relationship crucial – partnership between provider (public/NGO/private), person and family

Thinking of this more widely… Psychosocial support a broader term than intervention – encompassing activities that are not formalised and/or may not have a published evidence base For example – 6 sessions of CST vs 6 sessions of cultural events or 6 sessions of a social club?? Opens up possibilities in terms of who can provide the intervention, where etc.. Use evidence from other sectors, certain basic needs are a ‘given’, evidence focused on the ‘how’…

HSE & Genio Dementia Programme Support the person with dementia to remain at home living well for as long as possible and to improve the care system for people with dementia: Develop a range of community-based, personalised responses for people with dementia and their carers – 9 sites Wide range of stakeholders required if personalised support is to be provided for people with dementia at home in a cost- effective, sustainable way – Dementia Consortium Genio (2016) HSE & Genio Dementia Programme Keogh et al (2016) Dementia Consortia – Integrated networks to deliver individualised supports

Cullen and Keogh (2018) Personalised psychosocial supports and care for people with dementia in the community. Genio

Example of personalised response A woman with a diagnosis of early onset dementia is supported to attend a musical memories choir and an exercise class. A volunteer has been matched with this woman in the shared interest of walking. This relationship has also provided opportunity for her to speak about living with dementia. A paid support worker provides support at home and in the community, for example, support to reconnect with art by joining a local art group. Members of the group provide transport for this woman when outings are organised. A carer support group has provided the woman’s husband with a network of people living through the same experience with whom he can share his experiences. As this woman’s dementia progresses, more intensive in-home support has been provided.

Cost-effectiveness Year 2 evaluation (O’Shea and Monaghan, 2015) “Meaningful advancements in the delivery of person- centred care have occurred, with a broader range of flexible, responsive services now available in all four sites.” 181 people (32% of sample – total 568) assessed as being on boundary of care avoided institutionalisation Average weekly cost of community support (HSE+project) was €253 per week Economic evaluation (O’Shea and Monaghan, 2016) estimated potential saving of €3.2m in residential care

Risk! Attending to physical safety only can lead to ‘Silent harms’ – denial of right to choice and self- determination, ignoring other needs, form of institutionalisation Involvement of wider range of people in a person’s life and having a more ‘visible’ life can (paradoxically) help reduce risk Positive risk taking requires training and support for the practitioner, partnership with family and explicit buy-in by management and other agencies Reference: Clark (2015) Learning paper on Dementia and Risk. Genio

Summary of learning points

Relevant concepts Social prescribing - a means of enabling GPs and other frontline healthcare workers to empower people with social, emotional or practical needs to ‘co-produce’ their ‘social prescription’ which will improve their health and wellbeing, often using services provided by the voluntary and community sector Patients are referred to a link worker - to provide them with a face to face conversation during which they can learn about the possibilities and design their own personalised solutions, i.e. ‘co-produce’ their ‘social prescription’ https://www.socialprescribingnetwork.com/ https://www.hse.ie/eng/health/hl/selfmanagement/donegal/programmes-services/social- prescribing/

Move from this… Formal health and social care system Person and family Community and Voluntary sector

To this… P&F C&V H&SC

What we learned… This broad approach to psychosocial support for people with dementia is feasible in Ireland It provides benefits for the person, the carer and the family unit It is cost effective We need to re-think who provides what type of support We need to look beyond ‘traditional’ health and social care to provide sustainable support in the long term We need to work in a way that supports positive risk- taking – wider support needed for this change

Thank you www.cesrd.ie fiona.keogh@nuigalway.ie