POST-DIAGNOSTIC DEMENTIA SUPPORT IN CITY AND HACKNEY
A bit about us? Dr Nick Mooney Clinical Psychologist Diagnostic Memory Clinic Richard Reynolds, RMN Dementia Nurse Specialist. Diagnostic Memory Clinic Steven Reading Dementia Support Manager. Alzheimer s Society
CITY AND HACKNEY DIAGNOSTIC MEMORY CLINIC DIAGNOSTIC MEMORY CLINIC: Approximately 500 referrals 2014-2015 Primary source of referrals are GP s however referrals from other health providers will be accepted Approximately 15% of referrals for patients under 65 years. A predominant proportion of these patients are of BME and non-english speakers. Rates of mental health difficulties are also significantly higher in the under 65 years group All new referrals are offered a diagnostic interview, screening tool (e.g., ACE-III) within 28 days. Scans and further neuropsychological assessment are available if required. Patients are then offered a feedback session once all assessment procedures have been completed Depending on the outcome of the assessment patients will either be discharged, allocated to a follow-up clinic, or referred to the Dementia Care Team Currently we are unable to offer support for patients and carers diagnosed with MCI, VCI, or other non-clinically significant cognitive impairment
CITY AND HACKNEY DEMENTIA CARE TEAM DEMENTIA CARE TEAM: Occupational Therapy Consultant Psychiatrist Individual Psychological Support for clients and carers Specialist Mental Health Nursing Social Care Packaging/Case Management (Integrated working with LBH) Support Workers Social Inclusion, Reminiscence Therapy, Life Story Work Carers Drop In Support Group Cognitive Stimulation Therapy Group (CST) 7 week programme Carer support and assessment Signposting and Education for carers and clients Dementia awareness and behaviour management consultation work with community resources and care providers Client Centred Care Plan Approach (CPA) for clients with complex support needs Further therapeutic groups for patients with varying stages of dementia are currently in development
CITY AND HACKNEY DEMENTIA CARE TEAM DEMENTIA CARE TEAM: Secondary Care service providing an integrated and multi-disciplinary team approach (community psychiatric nurses, social workers, occupational therapists, psychiatrists, support workers, and psychologists) Primary source of referrals are from Diagnostic Memory Clinic and the GP Referrals encouraged via GP to ensure physical health screens have been carried out and to ensure GP coordination and transparency. The primary purpose of the DCT is to work with people who have a diagnosis of dementia and their families within the context of complex presentations - e.g., behavioural and psychological symptoms of dementia (BPSD). The majority of people with a diagnosis of dementia likely to experience BPSD (at some point during the illness). Behaviours include: hitting, spitting, screaming, swearing, acts of self harm, verbal sexual advances, confusion, repetitive questioning, misidentifications, and hiding items. 25% of people with dementia in the UK are prescribed anti-psychotics, mainly for treatment of behavioural difficulties. Anti-psychotics are effective in 1 in 5 presentations and can have significant side effects.
Understanding Distress: Stepped Care Model Step 4: Specialist Intervention (Individualised formulation-led interventions) Specialist Practitioners/ Carers/Care Staff. Therapists will be required to work with carers and systems around the person so specialist training in family therapy, group therapy, psychodynamic approaches, and cognitive behavioural therapy are required. Implementation of interventions occur within a multidisciplinary setting. Assessing needs: biopsychosocial formulations, full functional analysis. Interventions: psychological, social and occupational, medication, specialist reviews. Step 3: High Intensity Interventions (Protocol-led interventions) Experienced Practitioners/Carers/Care Staff. Structured protocols to assess needs and determine interventions: Dementia Care Mapping (Bradford Dementia Group), TREA model (Cohen-Mansfield, 2000), ABC/Behaviour charts; Systemic review of information from previous steps. Interventions: Cognitive Stimulation Therapy (CST), Reminiscence therapy, music, staff training, psychomotor & exercises. Step 2: Low Intensity Interventions (Management of contextual issues) GP/ Carers/Care Staff. Context: behavioural records (what/when/where/with whom?); physical environment (under/overstimulated?);occupation (boredom/isolation?; self-worth); emotions (communication of concern, worry?) Step 1: Recognition GP/ Carers/Care Staff. Screen for treatable conditions that may be causing or contributing to distress and confusion (delirium, vascular events, infection, pain, sensory loss), and for mental health problems (psychosis, anxiety, depression) Bradford Dementia Group: https://www.youtube.com/watch?v=qaikm9mr-ki Cohen-Mansfield, J (2000). Nonpharmacological management of behavioural problems in persons with dementia: The TREA model. Alzheimer's Care Quarterly 1, 22-34
Thinking about the future Advance Care Planning
LPA. Advance Decisions (Directives) & Statements. End of life care planning. ACP continuing to live well with dementia
Capacity to engage in ACP Offer of discussion and information Telephone contact Face to face meeting Examples of what an ACP discussion might include are: understanding about their illness and prognosis, concerns and worries about the future, important values or personal goals for quality of life and care, current concerns about unmet need, who else should be involved.
Alzheimer s Society National Services Information Fundraising Dementia Awareness Dementia Friendly Communities / Environments Campaigning and Policy Education Research Services inc. Helpline, Talking Point Publications. www.alzheimers.org.uk Dementia Community Road Show
National Dementia Helpline Aims Confidential Information and advice regarding dementia care, health and social care and legal and welfare rights Information on all forms of dementia care, health and social care and legal and welfare rights. Phone support Information (eg factsheets and other helpful information to service users. Staff Trained in providing information on all aspects of dementia. The National Dementia Helpline is for: people with a diagnosis of dementia - or people worried about their memory carers, relatives and others close to them anyone concerned about dementia including professionals working in the field of dementia care Getting in touch - 0300 222 1122 Helpline is open 9am-8pm Monday to Wednesday, 9am-5pm Thursday and Friday and 10am-4pm Saturday and Sunday
Talking Point is an online support and discussion forum available 24 hours a day, every day of the year. Volunteers greet new members, and provide guidance and support to all members, as appropriate. The Talking Point forum is not manned by professional advisers, and cannot provide medical or legal advice. Help is provided through shared experience and peer support. We provide the Talking Point forum for: people with dementia their carers, families and friends anyone concerned about dementia (inc. researchers and professionals working in the field of dementia care. Anyone with a computer and internet access can browse the content of Talking Point, simply by logging on to forum.alzheimers.org.uk/index.php
Alzheimer s Society City and Hackney Team Managers Bill Gibbons - SM (C & H + TH offices) Steve Reading (DSM C & H) Dementia Advisers Claire Wheeler Carol Feldon Mel Telford Phil Cowley Tamar Nissim Carers Assessment Worker (pt) Keely Chalker Peer Support Groups Facilitator (pt) Amina Mohammed Administrator (pt) Rumena Rahman Singing for the Brain Leader (sessional) Glenn Bassett Dementia Adviser Volunteers Amelia and Yas ina Group volunteers
Alzheimer's Society Dementia Advisers An information, advice, signposting, and support service for people who have received a diagnosis, or are worried about their memory and in the process of receiving a diagnosis. Dementia Advisers work according to allocated GP Clusters The Dementia Advisers are also available at the Dementia Adviser Quarterly Drop In session at Homerton Hospital. 1. South West Consortia 2. North West Consortia 3. North East Consortia 4. Well Consortia 5. Rainbow & Sunshine Consortia 6. KLEAR Consortia
Peer Support Groups Hackney Coffee Club (Dementia café) (monthly) St Josephs Hospice, Mare St, Hackney Social Activities Reminiscence Activities Entertainment Singing for the Brain (weekly) Sutton House Homerton High Street, Hackney Singing for the Brain is based around the principles of music therapy and singing. The structured group sessions use music to encourage communication and participation and include opportunities to talk to other people. Each session includes a range of activities including vocal warm-up and singing a variety of familiar and new songs.
Carer Support 1- Carers Assessment, Review and Support Service Assessments Reviews Support 2 - Carer Support Group emotional support, preventing isolation, practical information about living with dementia shared experiences and learning. Third Wednesday of the month, 11.30pm-1.30pm (Outward Office) 3 - Carers Information and Support Programme (CrISP) A series of workshops for people caring for a friend or family member with dementia. Topics include: What is dementia? How you can support and care for somebody with dementia The support services that are available Planning for the future 3 x a year run by Alzheimer s Society staff for up to 12 people.
Service Evaluation 2014: Qualitative / Quantative Examples 99% of people living with dementia felt that the support from their Dementia Adviser had increased their sense of wellbeing. Positive comments which support this include: Cannot take away the awfulness of dementia but made me realistic: a bit more reconciled to the diagnosis and future. I am now aware that all is not lost there is lots of help and support available if needed. Yes, her help and support has been invaluable. She was my main support over the past years. I could say things to her that I couldn't share with my family even. City and Hackney Alzheimer s Society Dementia Adviser Service Evaluation 2014 50 45 40 35 30 25 20 15 10 Service Evaluation (qualitative examples) 5 0 6 17 0 0 0 19 27 28 2 21 1 1 45 7 26 26 4 9 24 1 32 38 42 10 9 10 31 5 37 4 26 29 5 5 43 6 39 5 32 30 Total 27 refer rals since April 22 13 4 GP Pract ice refer rals since April 13 6 5 4
Any Questions. Dementia Awareness Week 2015 Alzheimer s Society in City and Hackney supports people living with all forms of dementia and their carers. We do everything we can to keep people connected to their lives and the people who matter most. Because life doesn't end when dementia begins. If you are living with dementia, or are worried about your memory, call us for help and support. We are only a phone call away: 020 8533 0091