March NHS Review of the Dementia Care Pathway. Qualitative results analysis

Transcription

1 March 2017 NHS Review of the Dementia Care Pathway Qualitative results analysis

2 Contents 1 Introduction Dementia Services Review Dementia Review Project Stages Communication and Engagement Stage Core statutory duties Equality Act Timescale Next Steps 7 2 Summary findings Aspects of services that work well Aspects of services that work less well Ideas for improvement 9 3 Methodology Online and postal survey Community events Outreach events Data analysis 10 4 View Seeking Respondents Outreach Events and Meetings Community Events Demographic Data 13 5 Key Findings Aspects of services that work well Aspects of services that work less well Ideas for improvement 35 6 Conclusion 43

3 1 Introduction NHS Dorset Clinical Commissioning Group (NHS Dorset CCG) and its local authority partners are reviewing the dementia care pathway with a view to ensure people living with dementia and their families/carers will achieve similar outcomes, regardless of where they live in Dorset. This is part of the vision for people living with dementia and their family/carers to be enabled to live well with dementia, no matter what the stage of their illness or where they receive care. The term dementia is used to describe a syndrome which may be caused by a number of illnesses in which there is progressive decline in many areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily activities. Alongside this decline, individuals may develop behavioural and psychological symptoms such as depression, psychosis, aggression and other challenging behaviours. The majority of people who are diagnosed with dementia have either Alzheimer s disease or vascular dementia, or a combination of the two. Across Dorset there are currently 187,456 people aged over 65, from this figure it is estimated that NHS Dorset CCG has 13,089 people aged over 65 living with dementia and across all ages it is estimated there is a total of 13,638. The population covered by this project are all ages of people at pre-diagnosis stage of dementia onwards. This includes those requiring information, guidance, care, support and/or treatment in the community, care homes, acute and community hospitals with particular considerations given to the needs of those living with moderate and severe dementia. The vision from Dorset Dementia Partnership is for every person living with dementia, their carers and families, to receive high quality, compassionate care and support from diagnosis through to end of life care. This applies to all care settings, whether it is one s own home, in a care home or hospital. National drivers have been derived from Living Well with Dementia: a National Dementia Strategy (2009) followed by other key documents. The most recent is the Prime Minister s Challenge on Dementia The NHS England Mandate has dementia as a priority area with a range of targets which include maintaining diagnosis rate of at least two thirds of prevalence, increase the numbers of people receiving a dementia diagnosis within 6 weeks of a GP referral and improving the quality of post diagnostic treatment and support for people living with dementia and their carers. 3

4 1.1 Dementia Services Review The review which commenced during 2016 includes various services currently commissioned by health and social care for people living with dementia and also considers the interfaces and co-dependencies between a variety of services which impact on people living with and their families/carers. The services included in this review are: Memory Support and Advisory Service (MSAS) part of the Memory Gateway Service providing support and advice for anyone concerned about their memory and their families/carers. This is provided by Alzheimer s Society and Memory Advisors offer the initial contact point and assessment and will refer people onwards to Memory Assessment Service when appropriate. They also provide post diagnostic support and advice; Memory Assessment Services (MAS) part of the Memory Gateway Service and this is provided by Dorset Health Care NHS Foundation Trust offering the formal assessment, diagnosis and treatment for dementia; Older Persons Community Mental Health Teams (OP CMHT) within Dorset Health Care NHS Foundation Trust providing care and treatment particularly when people living with dementia need higher levels of support or are exhibiting behaviours that can be challenging for others; In-reach Service provided through Dorset Health Care NHS Foundation Trust this service offers support and advice particularly with care homes across the East of the county; Specialist Inpatient beds for people living with dementia provided by Dorset HealthCare NHS Foundation Trust currently provision is at Alderney Hospital at Poole. Wards at both Chalbury Unit in Weymouth and Betty Highwood in Blandford have been temporarily closed due to staffing shortages; Intermediate Care Service for Dementia (ICSD) East providing an intensive support service for a time limited period through Dorset Health Care NHS Foundation Trust; Day Hospital provision through Dorset Health Care NHS Foundation Trust; Specialist dementia care at home (domiciliary) across Dorset, Bournemouth and Poole commissioned by each Local Authority; Early Help and Prevention services commissioned by each Local Authority; Dementia Care Homes and Dementia Respite Care across Dorset commissioned through Local Authorities; Acute Hospital links to community. This project is underpinned through co-production with key stakeholders, including people who use services and their families/carers. The aim has been to ensure that patients, carers, public, communities of interest and geography, health and wellbeing boards are engaged fully within the different stages alongside the health and social care partners leading the review. 4

5 1.2 Dementia Review Project Stages The key deliverables and timeframe planned for the Dementia Services Review are in Table 1 below. DELIVERABLES COMPLETION DATE STAGE 1: Preparation & Planning September 2016 STAGE 2: Needs and Data Analysis Report End February 2017 STAGE 2: Engagement and View Seeking Report Final Report end of February 2017 STAGE 3: Modelling November 2017 STAGE 4: Approvals and Consultation April 2018 STAGE 5: Evaluation of consultation and Decision Making Business Case June

6 1.3 Communication and Engagement Stage The objectives of the communication and engagement stage have been to ensure: Engagement activity and communication reflect the principles and values of NHS Dorset CCG: honest, responsive, courageous, responsible, collaborative, caring; Wide ranging promotion and advertising of the view seeking phase through targeted and segmented communications; A variety of view seeking methodologies offered to ensure that all communities are given opportunities to share their views: online survey, completing a short questionnaire, attending an event, small group discussions, outreach to existing meetings and groups; To ensure people living with dementia and their carers feel safe and supported to engage and offer views; Monitoring and evaluation of whether the engagement achieves its purposes, is representative of the local population and /or identifies any additional work required; Compliance with legislation including engagement and consultation with Health Overview and Scrutiny Committees; Equal recognition and value to patient, carer/supporter, staff and clinical views and experiences; Co-production approach throughout to ensure best possible outcomes and suitability for people needing services and their carers. 1.4 Core statutory duties All engagement and communication throughout this review will ensure NHS Dorset CCG and the Local Authorities legal requirements to consult about the way the NHS and Social Care is operating and about any proposed changes are followed. The duties particularly focus on: Consulting and engaging patients and the public; Consulting the local authorities Overview and Scrutiny Committee. Compliance is required with The Health and Social Care Act 2012 ( the Act ) and amends to the Local Government and Public Involvement in Health Act 2007 ( the 2007 Act ). From Section 242(1B) of the National Health Service (NHS) Act 2006, NHS Dorset CCG will ensure this review consults on: The planning of the provision of those services; The development and consideration of proposals for changes in the way those services are provided; Decisions to be made by the body affecting the operation of those services. To ensure compliance with Section 234 of the 2007 Act, this review will report on: The consultation carried out (or proposed to be carried out) before making any commissioning decisions; The influence that results of the consultation have on commissioning decisions. 6

7 As part of section 244 of the NHS Act 2006, NHS Dorset CCG will keep the local authority Overview and Scrutiny Committees well informed and allow opportunity to review and feedback on the review proposals. Under the Care Act 2014 local authorities now have a statutory duty relating to market shaping of social care provision. That duty relies on local authorities knowing their communities, and their care and support needs, and expectations. The Care Act also puts a legal duty on local authorities providing information to their citizens about care and support services. 1.5 Equality Act The Equality Act 2010 requires public bodies to consider how the decisions they make, and the services they deliver, affect people who share different protected characteristics and to publish information evidencing how this has been done. An Equality Impact Assessment and Privacy Impact Assessment have both been completed. 1.6 Timescale Actual view seeking took place from September until mid-november Next Steps This View seeking report and the Needs and Data Analysis report will need to inform the modelling stage of the project. The next stage will be taking a co-production approach and will be inviting all the stakeholders whom stated they wished to be kept informed alongside the Dorset Dementia Partnership to be involved with the Modelling Stage. To be kept informed of the Dementia Review progress please contact NHS Dorset Clinical Commissioning Group and ask to speak to the Dementia Team or e mail diane.bardsley@dorsetccg.nhs.uk Copies of this report will be available on and hard copies can be posted on request. 7

8 2 Summary findings There were 531 responses to the different view seeking methods. There were 275 responses to the online or postal surveys and one response. There were 106 attendees to the 15 community events and 149 attended the 10 outreach events and meetings. Views were gathered from service users, carers and staff. A total of 2,107 comments were made by respondents. There were 498 comments mentioning aspects of services that work well, 843 comments relating to what works less well and 766 relating to ideas for improvements. Comments were coded into main topics, and further sub-coded where appropriate. 2.1 Aspects of services that work well Seven main themes were identified within this section. The two main themes were: Support groups and agencies (189 comments) Dementia Care Pathway (113 comments). The remainder of comments were related to treatment of the patient (44 comments), social care (40 comments), support for carers (38 comments), not a lot/ nothing works well (38 comments) and provision of information (17 comments). Of the what works well comments that related to support groups and agencies, most referred to the support received from Dementia Care Pathway services, followed by charities and volunteers. Other sub themes included partner groups and providers, the Alzheimer s Society and Local Authorities. Positive comments that related to the Dementia Care Pathway were sub coded into the following themes; assessment and diagnosis, training and knowledge of staff, dementia units, access to services, acute hospitals, community hospital, and synergy of services. Five themes were identified within patient treatment, including activities for patients, engagement and treatment with dignity and respect, consistency of staff that deal with the patient, follow up and catching up after initial diagnosis and personalised service. Comments that related to what works well within social care services described positive experiences of care homes, respite care, domiciliary care, social workers and Tricuro. The support that carers receive was praised, in terms of practical and emotional support from groups and day care services as well as financial assistance. However there were a number of respondents who could not identify anything that they would like to mention in reference to what works well for them within dementia services. Some what works well comments related to the quality and quantity of information that is provided to people living with dementia, relatives and carers. 2.2 Aspects of services that work less well From the comments that related to aspects of services that work less well, seven main themes were identified: failures in the care pathway (314 comments), support for the patient (116 comments), support for the carer (105 comments), staff issues (78 comments), provision of information (76 comments), communication issues (56 comments) rurality and access to services (36 comments). 8

9 In comparison to the number of positive comments relating to the Care Pathway in the previous section, a far greater number of comments mentioned failures within the Dementia Care Pathway. Of these comments most related to failures in diagnosis and assessment and follow up, diagnosis pre gateway, followed by GPs, Mental Health teams nurses and hospitals. Other comments mentioned issues with day centres, care homes, social workers and home carers as well as a lack of specialist dementia units. The lack of adequate support for people living with dementia mentioned by respondents was further sub coded into four themes: emotional and practical support for patients, support groups and agencies, support for young people living with dementia and provision of activities. Two themes were identified within the support for the carers: respite care and other carer support. Carers feel there is a lack of adequate respite care options to be able to give them a break as well as poor financial, practical and emotional support that is made available to them. Comments mentioning issues with staff were further coded into three themes: not having enough staff, ineffective staff training and poor staff knowledge and no allocated staff/no continuity. The provision of information was criticised for poor accessibility to information, information overload from too many different sources, not knowing who to turn to for advice and a lack of understanding of the systems in place. Communication issues among staff, carers and patients were also raised which included poor communication between staff in different departments, poor communication between staff and carers or patients, difficulties when contacting services in a crisis situation and concerns when a patient has been contacted themselves and not their carers as problems arise if or when the patient then forgets this information. There is also poor accessibility to dementia services particularly for those who live in rural areas of the county. Respondents reported incidences of patients having to travel too far to access services and poor transport links with rural locations. 2.3 Ideas for improvement The majority of the comments within this section related to: service provision (286 comments) patient treatment and support (247 comments). Other ideas for improvement related to support for carers (123 comments) and staff issues (82 comments). Within the topic of service provision, six sub themes emerged; it was mentioned that there needs to be a smoother diagnostic and aftercare process and also changes within the Care Pathway particularly in terms of intervention from practitioners and services. Services also need to be more integrated and collaborated in their work and an increase to funding would enable reviews of practices and infrastructure in order to make further improvements. Inpatient units and acute care services also need improving as well as other services including self-help groups, memory cafes and day centres. Improvements suggested to patient support and treatment were sub coded into six themes: clearer information provision and education, general communication and data sharing, consistent and personalised treatment, variety of groups and activities and services for early onset dementia. Support for carers was sub coded into two themes: carers support and respite and carers feeling like they need to be listened to. Two themes were identified in order to overcome issues with staff: more staff, incentives and training and better utilising staff. 9

10 3 Methodology The review is taking a co-production approach led by a Project Board ensuring people living with dementia and their informal carers are engaged and kept informed. A Project Steering Group was established with various work-streams and sub groups to deliver the project. The Dorset Dementia Partnership established since 2012 and meets quarterly was involved in providing support towards the review and the Project Team. This group is a multi- stakeholder group including membership with people living with dementia and informal carers. A sub group of people living with dementia and carers and other stakeholders with engagement and communication expertise were established to act as a Project Champion Engagement Advisory Group particularly around deciding effective communication and engagement with people living with dementia and their carers. 3.1 Online and postal survey The online survey was designed and the web link promoted by NHS Dorset CCG. Paper responses were posted back via freepost to NHS Dorset CCG who entered paper responses in to the online survey. 3.2 Community events NHS Dorset CCG and the three local authorities held 15 community events across the whole of Dorset and during both daytime and evening to give as many participants as possible the opportunity to attend. These meetings lasted for two hours and gave information about the purpose of the review and approach. Participants were given the opportunity to discuss issues in small groups and were then invited to write their views down with assistance offered if necessary. 3.3 Outreach events 10 outreach events were held across the county with various staff groups including hospital staff, social workers, Intermediate Care Service for Dementia (ICSD) and In-Reach teams, Memory Support and Advisory Service (MSAS) staff and District Nurses. Attendees were provided with information about the purpose of the approach and given the opportunity to discuss issues. They were invited to write their views down by facilitators and note takers from NHS Dorset CCG. All three approaches of engagement followed the same process of asking participants a set of 3 broad questions around dementia services: From your knowledge/experience of dementia services what currently works well? From your knowledge/experience of dementia services what doesn t work well? How can dementia services be improved? 3.4 Data analysis All raw data from the view seeking approaches was recorded anonymously and collated in to one spreadsheet, capturing the view seeking method, stakeholder category and location where possible. The qualitative data was thematically analysed by The Market Research Group (MRG) at Bournemouth University and the most common themes that emerged are highlighted within this report. The quotes used 10

11 are to highlight pertinent issues. The MRG is an independent market research agency based within Bournemouth University. MRG specialise in providing market and social research and intelligence services to health organisations and local authorities, as well as for tourism and heritage organisations, tailored to suit the needs of individual clients. 11

12 4 View Seeking Respondents There were a total of 531 individual responses to the view seeking. There were 275 responses to the online or postal surveys. There were 106 attendees to the 15 community events and 149 attended the 10 outreach events and meetings held across the county. Table 1: Mechanism for response Mechanism Number of attendees / responses Online survey or postal 275 Community event 106 Outreach event Total Outreach Events and Meetings 9 outreach events and meetings took place throughout the county, with a total of 140 attendees. The table below shows who these outreach events and meetings were held with and the number of attendees at each. Table 2: Outreach meetings attendances Outreach Meeting Number of attendees / responses Bridport Hospital 15 Intermediate care Team (PICS) Poole 24 Alderney Intermediate Care Service Dementia Staff meeting 21 Memory Support and Advisory Service Staff 23 Corfe Mullen 3 East Intermediate Care Service for Dementia and In-reach team 15 Poole Central Team Social Workers 9 Poole Locality District Nurses Team 15 Alderney, Herm Ward Dementia Team 15 Total

13 4.2 Community Events There were 15 community events held throughout the county, with a total of 106 attendees. Table 3 below shows where these community events were held and the number of attendees at each. Table 3: Community events attendances Community Event Number of attendees / responses Wimborne 8 Swanage 16 Sherborne 6 Sturminster Newton 2 Poole 6 Dorchester 10 Dorchester Evening 1 Shaftesbury 5 Kinson, Bournemouth 21 Blandford 5 Bridport 11 Weymouth 10 Weymouth Evening 0 Christchurch Afternoon 2 Christchurch Evening 3 Total Demographic Data Some basic background demographic data was collected from those who were in attendance at each outreach meeting, as well as those who attended each community event. Table 4: Demographic data for outreach meetings Outreach Meeting No. of Service Users No. of Carers No. of Staff Other Total No. of Attendees Bridport Hospital Intermediate care (PICS) Poole Alderney ICDS Staff meeting MSAS Staff Corfe Mullen East ICDS and In-reach team Poole Central Team Social Workers Poole Locality District Nurses Team Alderney, Herm Ward Dementia Team Total

14 Table 5: Demographic data for community events Community Event No. of Service Users No. of Carers No. of Workers Other Total No. of Attendees Wimborne Swanage Sherborne Sturminster Newton Poole Dorchester Dorchester Evening Shaftesbury Kinson, Bournemouth Blandford Bridport Weymouth Weymouth Evening Christchurch Afternoon Christchurch Evening Total Additional equality and diversity data was collected from those who were in attendance at each community event. The table on the next page shows the total number of attendees broken down by age, sex, marital status, sexuality, disability, ethnic origin, religion or belief and pregnancy. Interpretation of this data should be made with some caution however, as not all attendees to each of the community events completed all or any aspects of the equality and diversity form. 14

15 Table 6: Equality and diversity data for community events Age Sex Male Female Transgender Married Partner Living with Partner Marital Status Civil Partnership Single Widow Prefer not to say Sexuality Heterosexual Bisexual Prefer not to say Disability Yes No Prefer not to say Ethnic origin White British White English Prefer not to say Religion or Belief Christian Atheist Other None Prefer not to say Pregnant Yes No Not Applicable Prefer not to say

16 5 Key Findings There were a total of 2,107 comments that were made by respondents. There were 498 comments that mentioned aspects of services that work well, 843 comments relating to what works less well and 766 suggestions for how services could be improved. Figure 1: Consultation comments Consultation comments What works well 498 What works less well 843 Improvements Aspects of services that work well A total of 498 comments were made relating to aspects of services that work well. Comments related to aspects of services that work well were coded into one of seven different main topics, and further sub-coded where appropriate. The majority of the comments which discussed what works well related to support groups and agencies (189 comments) or the Dementia care pathway (113 comments). The remainder of comments were related to treatment of the patient (44 comments), social care (40 comments), support for carers (38 comments), not a lot/ nothing works well (38 comments) and provision of information (17 comments). Figure 2: What works well comments What Works Well Main Topics Support Groups and Agencies 189 NHS Care Pathway 113 Treatment of Patient Social Care Support for carers Not a lot, nothing, criticism Provision of information

17 5.1.1 Support Groups and Agencies There were 189 comments that supported the work and care provided by a number of different support groups or agencies within dementia services; the most of any of the main themes that emerged from the comments discussing what works well. Figure 3: Support groups and agencies comments Support Groups and Agencies Sub Topics NHS 99 Charity/ Volunteers 48 Partner groups or private 22 Alzheimers Society 14 Local Authorities 6 Of these, more than half related to the teams and services provided by the Dementia Care Pathway (99 comments); NHS support teams and services referred to by respondents included the Memory Assessment Service, the In-Reach Team, GP services, day care,, Mental Health Teams, Intermediate Care Service for Dementia team and the Older People Community Mental Health Team. They also included comments on the Memory Support and Advisory Service provided by Alzheimer s Society. Our GP has been wonderful in supporting me as my husband is young to have dementia (Person living with dementia, family member/carer) The memory assessment service have provided a very good and supportive service, as has the memory support and advisory service I consider that the in-reach services provide an excellent service and would benefit homes by it being made available to all homes and domiciliary settings. Comments also reflect how support from charities and volunteers can make a positive difference to people living with dementia, as well as their carers and relatives (48 comments). I was very grateful to another scheme that was organised by [x] from the mental health team, the opportunity for my husband to participate in the therapeutic benefits of gardening and craft at Future Roots Whitfield. Here my husband spent many happy hours gardening under supervision. Certainly a wonderful venture for dementia. Let s hope the scheme continues. 17

18 The Mindful Group have been very good and very helpful for me as a carer and my husband with dementia. Their meeting in Stalbridge, Gillingham are well attended and very friendly, always useful advice and support. There are some activities locally like Memory Cafés and singing that are good. Her grandfather who has dementia loves the Prama services. (Kinson Community Event) Partner groups providing different education courses also emerged as a support network which works well for respondents (22 comments). CRISP and the courses they offered Eventually, a long time after diagnosis, we were referred for a Memory Matters course. This was extremely helpful and we were given a lot of information. A number of comments specified the positive support received from the Alzheimer s Society (14 comments). These comments praised the Alzheimer s Society for its caring, support network for people living with dementia and their families as well as the information they provide about dementia. Lovely, caring and understanding memory house (via Alzheimer s Society). Great support for family as well as mum. The whole procedure from speaking to someone from the Alzheimer s Society at an open day at the Family History Society premises to seeing a psychiatrist who confirmed that I had borderline (mild) cognitive impairment was non-threatening. I was treated with courtesy and kindness and at no time was it inferred that I was wasting anybody s time. (Person living with dementia) The Alzheimer s Society is a good source of information and access to support. A few comments also mentioned the support through Local Authorities and how these services can make a difference (6 comments). Bournemouth Subsidised Home Care vouchers are vital for me as a sole carer, they give me the opportunity to get out for a couple of hours once a week to relieve the pressure of caring, and allow me time the time to relax, shop etc. Also very useful is the Short Break Service, enabling the carer to get out for a few hours. 18

19 5.1.2 Dementia Care Pathway When considering what works well within dementia care services, a number of comments related to the Dementia Care Pathway (113 comments). From these comments, 7 common themes were identified; assessment and diagnosis, training and knowledge of staff, dementia units, access to services, acute hospitals, community hospitals, and synergy of services. Figure 4: NHS Care Pathway comments NHS Care Pathway Sub Topics Assessment and diagnosis 42 Training and knowledge of staff, teamwork 25 Dementia Units 14 Access to services Acute hospitals Community hospitals Synergy of services Of the comments related to the Dementia Care Pathway, more than one third referred to the positive experience they had had during assessment in order to get a dementia diagnosis, in particular the work of the Memory Gateway including the Memory Support and Advisory Service and Memory Assessment Service (42 comments). Referral process is helpful and straight forward, once we know who the memory adviser is we can speak to them. Memory clinic diagnosis follow up was good, include scans etc. Once diagnosed Memory Assessment Team provided only useful information. A number of respondents praised the staff who work within these services (25 comments). In particular comments emphasised the importance of effective teamwork when delivering dementia care which comes from supportive management and collaboration between different teams, as well as appropriate staff training. Having good quality staff, this includes nursing, medical, domestic, and occupational therapy staff. Working as a team. Having good support management. Having the knowledge about dementia. (Family member/carer, work/ have worked with people with dementia in Dorset) 19

20 Staff that work with dementia services in my experience are very caring and want to do their best for the patents despite shortages of staff and provision. Comments also mentioned dementia units when considering what works well for them, in particular, many of these described a positive experience of care in Alderney Hospital (14 comments). Our friend s end of life care in September was outstanding in ST Brelade s ward, at the Alderney Hospital. (Friend of someone with dementia) I feel on Herm Ward at Alderney Hospital we assess, treat and discharge people very effectively. I feel proud to be part of the team here. The Therapeutic Engagement project had an excellent effect on the ward Care at Alderney hospital which is brilliant. After 6 years my husband became aggressive towards me and although I knew it was the Alzheimer s causing the actions I was unable to cope with him after six years coping on my own (On behalf of someone with dementia) Nine responses commented on the accessibility of services offered to people living with dementia, in terms of how far they had to travel and how easy it was to get to these services, highlighting the importance of local, accessible services for people living with dementia. Easily accessible Memory Clinic. (Family member/carer, work/ have worked with people with dementia in Dorset) Local service. Integration with local teams. Responsive services when crises arise. Having services localised. There were 8 comments which related to when the care provided by acute hospitals within Dorset had worked well. These comments included experiences of care in Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust, Poole Hospital NHS Foundation Trust and Dorset County Hospital NHS Foundation Trust. The hospital is making improvements in the way they assist patients with dementia and are creating dementia friendly environments. The approach of a number of consultants and nurses we were privileged to meet i) when my father required surgery under local anaesthetic as an outpatient in a local NHS Trust, and ii) during radiotherapy treatment. These people treated my father with dignity and respect and as a person rather than an old man with dementia who was not worth bothering with. (Family member/carer, on behalf of someone with dementia, work/ have worked with people with dementia in Dorset) Improved support for Carers and patients diagnosed with memory loss in the Royal Bournemouth Hospital 20

21 In addition to this, 8 of the what works well NHS Care Pathway comments were related to the care provided by community hospitals; comments referred to the care provided by community hospitals in Christchurch, Weymouth and Blandford. Specifically comments were made regarding the excellent service provided by the Melcombe Day Hospital and suggestions were made that it should be retained. The continued support of the various agencies concerned with my wife s welfare, in particular the support of the Melcombe Day Hospital and the staff, they were a godsend, I would not have survived without their assistance. (Family member/carer, work/ have worked with people with dementia in Dorset) Inpatient team learnt a lot how to cope with people with more difficult behaviours proactive ringing each weekend to check any needs. (Bridport Community Hospital Outreach Event) Finally, when considering what works well within the Dementia Care Pathway, seven comments praised the synergy of services provided, with these comments mostly coming from staff who work within different dementia services. When tracker nurses in GP surgeries work closely with MSAS. Joint-working between intermediate care dementia service and OP community mental health teams which prevents unnecessary admissions to hospitals is an essential service. Services that operate from a multidisciplinary model and that are able to apply the principles of a comprehensive geriatric assessment. Having good communication between all involved parties - families & carers, GP, CMHT, Social Services, care agencies etc. (Family member/carer, work/ have worked with people with dementia in Dorset) 21

22 5.1.3 Treatment of Patient 44 comments were made by respondents in reference to what works well in the treatment of patients. There were five main themes identified within this section: activities for patients, engagement and treatment with dignity and respect, consistency of staff who deal with the patient, follow up and catching up after initial diagnosis and personalised service. Figure 5: Treatment of patient comments Treatment of Patient Sub Topics Activities for patients 14 Engagement, treatment with dignity and respect 9 Consistency of staff who deal with patient 8 Follow up and catching up after initial diagnosis 7 Personalised service 6 One of the most common themes identified within what works well in terms of patient treatment was the activities available for patients. There were 14 comments made by respondents in relation to the type of activities available and the positive outcomes observed in patients as a result of these activities. Access to activities and interests that are pitched at the right level for the person, taking into account their individual needs. We have seen people start at our memory group quite withdrawn and apprehensive but who, over a period of time, have increase in confidence and have improved their cognition because of appropriate stimulation pitched at the right level for them. (Family member/carer, work/ have worked with people with dementia in Dorset) Keep relative s mind active, day centres, Age UK lunch clubs and coffee mornings. (Family member/carer, on behalf of someone with dementia) A variety of activity choices/services. A further 9 comments praised the manner in which people who work within dementia services engage and treat people living with dementia, doing so with dignity and respect. The people that understand that dementia have patience and make time to explain in simple terms in unhurried settings. These understanding people, clinical staff, friends or family make the best of an unwanted condition and make those with dementia at ease. These positives are observed in the home setting and when attending dementia specific clinical appointments. (Family member/carer, on behalf of someone with dementia) Services that see their role as being to work alongside those with dementia and their carers to best live the lives they want to lead. 22

23 Respondents also emphasised how continuity of staff throughout their care makes a positive difference to people living with dementia (8 comments). Patients need to have 1 contact point. Look at needs of person then co-ordinate how all resources can be used to meet need. Consistency having contact with the same people (carers, staff etc.) reduces anxiety of having to deal with new people who may not understand someone s concerns Familiarity with the person and their routines, likes and dislikes, as well as a consistent approach can make the difference between care going well and care being difficult. (Family member/carer, work/ have worked with people with dementia in Dorset) Finally, a few comments praised the follow up process once a diagnosis of dementia has been given (7 comments) and the personalised experience of treatment received by people living with dementia that is tailored to their individual needs and requirements (6 comments). Emotional support available, clubs etc. AFTER diagnosis, support by doctors, professional carer. (Family member/carer, work/ have worked with people with dementia in Dorset, on behalf of someone with dementia) For the first few years after his diagnosis in 2010 there was no systematic review of his condition. This has now changed and we have had reviews in 2015 and (Family member/carer, on behalf of someone with dementia) The people centred approach its very personal and very individual to the patient. (Level 2 Dementia Course) Having experienced carers and support patient centred care Social Care There were 40 comments that related to what works well within social care services and how this support can make a difference to both the patient as well as their families. Comments related to positive experiences of care homes, respite care, domiciliary care and social workers. Initially the care home arranged outings, family events, Christmas pantomimes, parties etc. to engage with family members of dementia residents and staff were exceptionally caring and able to devote time to dementia residents. We (the family) felt that our relative had settled in well and was being very well looked for. (Family member) My mother has some help 5 days a week with her daily washing, dressing etc. through social services this is invaluable as it s a different face and someone else to talk to This respite care is our lifeline. (Family member/carer, on behalf of someone with dementia) My husband is well looked after in his care home at Talbot View. (Family member/carer, on behalf of someone with dementia) 23

24 5.1.5 Support for Carers A number of comments praised the support that carers receive, including practical and emotional support as well as financial assistance (38 comments). to have a highly qualified person to support through the whole nightmare of dementia and as above services that helped to give practical, personal, empathetic caring to the carer. (Family member/carer, on behalf of someone with dementia) He goes to the carers centre in Westbourne once a month or more and finds it very helpful. (Kinson Community Event, Carer) Meeting others with same issues The specialist groups are very useful. (Family member/carer, on behalf of someone with dementia) Not a Lot/ Nothing On the other hand there were a number of respondents who could not identify anything that they would like to mention in reference to what has worked well for them within dementia services (38 comments). These comments mostly came from family members and carers of people with dementia. In all honesty not a lot. Very little contact, so nothing has worked well to date Provision of Information There were a number of comments that referenced both the quality and quantity of information that is received by people living with dementia and their families (17 comments). Specific groups that were praised for the information that they provide to people living with dementia include Dorset For You, Age Concern and the Memory Support and Advisory Service. The information sheet for my partner it gives advice on how best to deal with me. Doctor s surgery gave us an information sheet telling us what benefits were available to us. (Person living with dementia) All the support services have been helpful. We have received lots of information. (Person living with dementia) I have found the information on Dorset For You very helpful. 24

25 5.2 Aspects of services that work less well 843 comments were made in relation to aspects of dementia services that work less well. These comments were coded into one of seven main topics, and further coded where appropriate, and mostly related to: failures in the care pathway (314 comments), support for the patient (116 comments) support for the carer (105 comments). Other themes that also emerged were staff issues (78 comments), provision of information (76 comments), communication issues (56 comments) and rurality and access to services (36 comments). Figure 6: What works less well comments What Works Less Well Main Topics Care Pathway failures 314 Support for the patient Support for the carer Staff Issues Information provision Communication issues Rurality and access to services

26 5.2.1 Care Pathway Failures 314 of the 843 comments related to failures within the Dementia Care Pathway; while previously many had discussed what works well within the Dementia Care Pathway (113 comments), a far greater number of comments have discussed what works less well, highlighting the need for these services to be addressed. Services mentioned by participants included mental health teams and nurses, Memory Support and Advisory Service, Memory Assessment Service, day centres, care homes, social workers, dementia units etc. Figure 7: Care pathway failures comments Care Pathway Failures Sub Topics Diagnosis and assessment and follow up, diagnosis pre gateway 103 GPs, Mental Health teams, Nurses, Community hospitals 97 Day centres, Care homes, Social workers, home carers 84 Specialised dementia units and lack off 30 Of these comments, one third, including many comments from staff, recalled a negative experience of diagnosis, assessment and follow up (103 comments). Follow ups for memory gateway are a long wait and getting help and advice before a referral can be challenging for those who are awaiting a diagnosis or their carers. I have not had support from the memory assessment team, the memory support advisory team. The only diagnosis was when he was in hospital and I was not coping due to his poor mobility and UTI and they diagnosed advanced dementia. (Family member/carer, work/ have worked with people with dementia in Dorset, on behalf of someone with dementia) The amount of time it takes to get diagnosed, and assigned suitable care (Family member / carer of someone with dementia) A number of comments also criticised many of the services across the NHS, resulting in a negative experience of care for people with dementia as well as their carers and family members (97 comments). Issues that were referred to by respondents were widespread across services within the NHS including GPs, mental health teams, nurses and hospitals. Horrific if person with dementia is admitted to hospital. No understanding by professionals who should know better how to deal with and understand someone with dementia A total lack of care and indifference by some staff. Being informed the patient would be safer at home. (Family member/carer, work/ have worked with people with dementia in Dorset) 26

27 Meal in bed for inpatients, staff need to pay attention to patient s position to ensure they can eat. I raised this with hospital staff and they put notice up (B mth) explaining this. Cheese and biscuits unable to eat, as it hadn t been unwrapped by staff eyes are open but they cannot see. (Christchurch community event) Alongside this, issues were also raised in reference to day centres, care homes, social workers and home carers (84 comments). Staff mentioned the difficulties they face when dealing with patients challenging behaviours in care homes. Carers commented on the difficulty of the process of transferring patients from their own home to an appropriate nursing home and lack of appropriate provision. There are not enough specialist dementia nursing homes that are able to cope with challenging behaviour which means that patients get admitted to wards for longer than is necessary due to the demand for community beds. There is a lack of quality day care in the area. Day centres are often oversubscribed and there is a lack of specialist care for people who do not meet day centre criteria but who require appropriate stimulation to enable them to function at their best. (Family member/carer, work/ have worked with people with dementia in Dorset) Meanwhile relatives and carers described negative experiences where they had felt let down by the social care services previously mentioned, resulting from a lack of specialist care. An elderly married couple (...) had looked after each other with minimal care support for the past 10 years. The husband is physically fit but has dementia. His wife has slightly impaired mobility. Together they met the basic needs of each other and considered their lifestyle to be independent. She recently had a fall. The cause of the fall was heart related so she was kept in hospital. It was not recognised when she was admitted that she was a carer for her husband. With no family local he deteriorated quickly. The visiting health care support he received did not notice that he was neither eating nor taking his medication. He was moved to a care home. Each day he packs his clothes into plastic bags thinking he will be going home. He knows what home is. He knows his room in care is not home. He is distressed every day. His wife has been allowed home but requires daily care so is to be moved to another care home. Her husband phones her each morning to say hello and says he will speak with her tomorrow. Within an hour he will call her again to say hello and says he will speak with her tomorrow. Their care needs are different so they are to be placed in different homes. Separated by the care system after 60 years of marriage. (Family member/carer, on behalf of someone with dementia) The nursing home insisted that requesting female carers for my mother was a breach of the male staffs employment equality rights, even though my mother experienced great distress every time she had to be attended by a male. Furthermore, it was mentioned by a number of staff who work within services across Dorset that there is a lack of specialist dementia units with staff who have the appropriate knowledge of how to treat and care for people living with dementia, increasing pressures on acute hospitals and care homes (30 comments). 27

28 More beds are needed for acute patient. Care homes, nursing homes cannot cope with acute dementia patients so the person ends up here having been given notice then other care homes will not take them, so they are stuck here... this prevents other new clients coming into the hospital. Closing dementia beds will lead to greater admissions to acute hospitals. We pick up a lot of work that no one else wants to do. (Alderney Hospital Outreach Event) Support for the Patient The lack of adequate support for people living with dementia was also a common theme that emerged (116 comments). Figure 8: Support for the patient comments Support for the Patient Sub Topics Emotional and practical support for patients 48 Support groups and agencies 34 Lack of support for young dementia patient 24 Provision of activities for dementia sufferers 10 Staff, carers and relatives feel there is a lack of emotional and practical support offered to patients to help them cope with their condition, including financial assistance and practical assistance with their daily routine and activities (48 comments). Making it a more settled environment (lighting), sounds, how people talk to patients with dementia, having enough time to listen and engage with the patients with how they need as not every patient is the same. My mother is incontinent and getting pads etc. was difficult and getting changes in thickness, style etc. is also difficult. This is not well supported by the NHS. 28

29 many people who have complex needs are placed in the cheapest homes who can t meet their needs the burden for this is felt by home staff, carers, patients themselves and often people find themselves moved on or admitted to hospital or a revolving door in community services. Bed monitor very thirsty on batteries. When on a limited budget, this can be a drain and result of the equipment not being used to the full for the fear of the cost. No access to a wheelchair loan or loan equipment. The work of support groups and agencies has also been criticised by respondents (34 comments). Relatives and carers mostly commented on the fragmented service experienced from these charities, organisations and private groups as oppose to a coordinated approach which would be more beneficial for people living with dementia. I have found the dementia cafes not very helpful, the groups are boring and not at all social, or friendly. I visited an Alzheimer s group with my mother in law. The group was very large There were 5-6 volunteers who were poorly utilised The people with dementia were not encouraged to participate and the people answering the questions were the carers present. Whilst this was a good opportunity for the carers to get some support there was little consideration for the needs of the people with dementia. It was quite noisy so hearing what people said was difficult and one gentleman with dementia commented that he found it impossible to talk to someone on the other side of the table as the table was too big I would have expected better of an organisation that supports people with dementia. (Family member/carer, Work/ have worked with people with dementia in Dorset) Well-meaning young ladies at Alzheimer s Society but couldn t really offer anything. (Sherborne community event) Respondents also expressed concern over the lack of support for young people living with dementia (24 comments). Lack of services for younger people with dementia No respite care for people who are self-funding and even worse if you are also under 65 years of age. I am very unhappy that there is no specialist in early onset dementia in the whole of Dorset The doctors that we do see are general old age dementia specialists and I do not have confidence that their experience is right for the treatment of my husband. Sadly that had meant that his treatment has been very poor in the last two years, with major crises in his care and increased deterioration in his dementia and general health. Our experience from his GP is much the same wholly inadequate because of a lack of knowledge. (Family member/carer, on behalf of someone with dementia) 29

30 Finally respondents also feel there is a lack of activities offered to people living with dementia (10 comments). Not enough exercise for residents in care home. More activities needed. (Family member/carer, work/ have worked with people with dementia in Dorset, on behalf of someone with dementia) Cannot find enough activities to allow my mum to have a social life. Groups that I think would be beneficial for her do not provide transport or cannot guarantee there will be someone to see her into a taxi at the end to prevent her wandering off Often people are isolated because of their illness and are often treated as a 'one size fits all'. Not everyone does well in large groups and there seems to be very little individual support for people. Carers have told me that often sitters do not do anything with the person with dementia. Surely, this is an excellent opportunity to work on an individual level to do something the person finds meaningful? People who are stimulated function better for longer therefore saving money on residential care. (Family member/carer, work/ have worked with people with dementia in Dorset) 30

31 5.2.3 Support for the Carer Respondents also felt that there is a lack of adequate support offered to carers (105 comments). Figure 9: Support for the carer comments Support for the carer Sub Topics Other support for carers 61 Respite for carers 44 Many of these comments referred to the desperate need for suitable provision of respite care (44 comments). Carers feel that there are not enough groups or facilities that offer adequate respite care which would enable them to have regular or quality breaks. There is a desperate need for reliable respite care. The Help and Care organisation was slow to respond to my requests for the sitting service and I had to make other arrangements. I was not offered residential respite care and I understand from friends this is extremely difficult to arrange. Lack of suitable day centre facilities to enable carers to have a break. Short break service only releases a limited number of hours not enough for carers to have regular and quality breaks. Respite care for a day or two, or a week in severely difficult cases would be a welcome break for the carer(s). I would suggest more self-help groups perhaps initiated by a professional, on a regular basis and very local. The help needed is unpredictable and therefore needs to be more available to people in distress. (Friend of someone with dementia) However, more of these comments reflected the need for other types of carer support other than respite care, including financial, practical and emotional support (61 comments). Some comments also referred to circumstances where the carer themselves are in need of care and do not know what to do. My husband has Vascular Dementia and I have been his only carer. In February 2016 I had a fall I contacted Carers Direct for urgent help the help highlighted in courses and booklets on Dementia and being a carer does not match the realities, there is a big emergency gap that needs covering when carers are ill or incapacitated. Looking after the carers who are quite ill themselves. 31

32 Moving here from another part of the country we expected a dementia support worker to be available. It turns out we cannot get support in the same way No support plan offered. No financial help for carer if sufferer is self-financing All of savings will go on care I will have to now find ways to carry on at an already difficult time my financial future has been destroyed even though I wasn t the patient. No support even when I was undergoing chemo for cancer still had to be sole carer Staff Issues In addition, a number of comments mentioned issues with the staff who work within dementia services (78 comments). Figure 10: Staff issues comments Staff Issues Sub Topics Not enough staff 35 Training of staff, knowledgeable staff 24 No allocated staff/ continuity 19 People working within a range of dementia services feel that the closing of units and diminishing staffing levels is putting staff under unnecessary strain, and consequently creating an unsafe environment for people living with dementia. The shortage of staff was identified as a problem on specific services that people living with dementia use (dementia units, care homes) or mentioned more generally and without specifying the service affected (e.g. not enough staff) (35 comments). Having less than safe staffing levels. Closing units down, not having enough staff (staffing levels) on the floor puts stress on staff. Minimum wage is required for keeping staff, as they work long hours and have lots of paperwork to complete. It s also noted there is not the opportunity or enough time to care for the people with dementia. They just have enough time to manage the tasks the staff are required to do and no extra time for caring for patients. (Bridport Community Event) 32

33 In addition, comments suggest staff training is ineffective, in terms of not providing them with adequate knowledge of dementia itself or how to care for people living with dementia, resulting in poor experiences of services (24 comments). Having significant areas where there are professionals/workers with little specialist training/ knowledge/experience working with people with dementia and their carers. (Family member/carer, work/ have worked with people with dementia in Dorset) Hospital staff not educated in dementia/care of elderly people. Ageism and discrimination from hospital staff. (Family member/carer, work/ have worked with people with dementia in Dorset, on behalf of someone with dementia) Poor training process at University/school level. Many newly qualified staff have no idea about dementia, or most other mental health issues. Respondents also felt there was a lack of continuity of staff, possibly due to services being understaffed and fragmented. This has resulted in poor experiences of dementia services, is confusing for patients while also draining for their carers. Multiple teams, and multiple unfamiliar faces supporting the person. (Family member/carer, work/ have worked with people with dementia in Dorset) Disjointed services. No after care from doctors. People not having a consultant throughout their dementia journey. She saw a different person each time and they did not initially speak with the family. This gave somewhat a somewhat false picture of her abilities as she had a very good social façade; in consequence their assessment letter was inaccurate. Seeing someone different made it difficult for them to gauge any change. (Family member/carer, work/ have worked with people with dementia in Dorset) Information Provision There were a number of comments from carers and patients which criticised the information that is made available to them (76 comments). Issues described included poor accessibility to the information they need, circumstances where there is an overload of information from too many different sources, feeling isolated and not knowing who to turn to for advice and a lack of understanding of the system. I feel there may need to be more support for families about understanding the illness etc. It s taken a long time to work through all the information, was completely overwhelming and feels would have been helpful to have had someone to go through all the advice with them. She found it difficult herself let alone someone of her mother/fathers age trying to comprehend all of this (Kinson Community Event, Carer) Early diagnosis Support and explanation for relatives Financial/legal support/signposting An understanding of the issues to be faced (Family member/carer, work/ have worked with people with dementia in Dorset) 33

34 5.2.6 Communication Issues A number of comments raised issues with communication among staff, carers and patients (56 comments). Issues raised included poor communication between staff in different departments, poor communication between staff and carers or patients, difficulties when contacting services in a crisis situation and concerns when a patient has been contacted themselves and not their carers as problems arise if or when the patient then forgets this information. As prime carer for my mother I wish I had been informed at the time the diagnosis was made. (Family member/carer, work/ have worked with people with dementia in Dorset) As one of two main carers for my father, I felt we failed to get our voices heard I felt let down by the system and by fellow nurses; e.g. information we gave about my father s history and status prior to admission was not listened to or acted upon and consequently his needs were not adequately acknowledged or attended to (Family member/carer, on behalf of someone with dementia, work/ have worked with people with dementia in Dorset) Rurality and access to services Finally, many criticised the accessibility of services for people living with dementia, particularly for those who live in rural areas of the county (36 comments). Issues included the distance patients have to travel to access services and poor transport links between services and rural locations. These comments highlighted the negative impact problems with accessibility can have on people with dementia, as it can cause confusion or become unsettling. Care services are appalling, especially in rural areas, advice is limited to those who are self-funding and not usually reactive enough to prevent hospital admissions and severe carer strain. Having people travel large distances to access services in rural areas many older people do not have transport so cannot make their own way to things. It is not always possible for carers or family members to take time off work to transport them. (Family member/carer, work/ have worked with people with dementia in Dorset) He does not feel that he had sufficient support from the Parkinson s Disease Nurse predominantly because of capacity and again the cross boundary issues of living on the boundaries of Dorset and Somerset. Although his wife struggled with her mobility she had to attend the community hospital in Sherborne in order to be seen by the Parkinson s Disease Nurse Specialist and Physiotherapist, which they said was because the service could not be provided for her at home, because it was not within their local service boundaries. The Consultant from Salisbury was much more supportive than the Dorset Consultant who did not appear to be very adaptable in understanding his wife s changing needs. It was not until his wife fell and fractured her hip that he believes they received the support they really needed. (Sturminster Newton Community event) 34

35 5.3 Ideas for improvement There were a total of 766 comments which suggested ideas for how dementia services in Dorset could be improved. These were coded in to one of four main topics, and then further sub-coded. Of these comments, the majority related to: service provision (286 comments) patient treatment and support (247 comments). Other ideas for improvement that were suggested related to support for carers (123 comments) and staff issues (82 comments). Figure 11: Ideas for improvement comments Ideas for improvements main topics Service Provision 286 Patient Treatment & Support 247 Support for Carers 123 Staff Issues Service Provision There were 286 suggestions for how to improve the provision of dementia services, the most of any of the themes which were identified for changes that need to be made. Figure 12: Service provision comments Service Provision Sub Topics Smoother process before and after diagnosis, aftercare 76 NHS pathway improvements 55 Services integration & collaboration Review of practices & infrastructure improvement, more funding Inpatient units and acute care Other services improvements

36 The most common way respondents felt service provision could be improved would be to have a smoother diagnostic process throughout, including during aftercare services (76 comments). Respondents felt there was a need for dynamic action sooner as well as better, more frequent communication from service providers post-diagnosis. Be proactive with diagnosis even if someone is presenting to health services for other reasons. Early diagnosis and support will improve the quality of life for those affected and ultimately should save time, money and effort for health services. Have more contact with the person with dementia. Maybe once a year or twice a year. My mum has had no contact since she was first diagnosed. There are too many stages in the assessment process towards diagnosis this means that a diagnosis can take months there is a lack of post diagnostic support I have met people who have been given a diagnosis who have no idea what it means and where to get further help. Another service I worked with had developed a booklet with the local council and Alzheimer s Society which had information about what to do after diagnosis, where to seek help and support, carers information etc. (Family member/carer, work/ have worked with people with dementia in Dorset) Improvements to dementia services could also be achieved by making changes to the Dementia Care pathway (55 comments), for example by having earlier intervention from practitioners and services, as it is suggested this would reduce the strain on both the healthcare system and carers and would allow people to stay in their own homes for longer. More timely involvement of counsellors and those involved in helping people with dementia in the very early stages treatment should be introduced at an earlier stage. More help and advice at the very earliest stages of dementia would enable sufferers to deal with their dementia themselves for longer, and to remain independent for longer, thus easing the burden on relatives and carers. (Friend of someone with dementia) I would have liked more access to some kind of professional assessment earlier on perhaps if this had been available earlier this may have meant a less stressful process for all concerned and also prevented his hospitalisation. Patients on the cusp of dementia should be recalled to be reviewed every 6 months. (Bridport Community Event, person living with dementia) There were also suggestions that more effective integration and collaboration between services would improve the overall experience of dementia services for patients, relatives, carers and staff (46 comments). I would like to see a Health Orientated Day centre or one day a week, drop in health clinic where their general wellbeing could be assessed where all medical reviews could be implemented in one hit without all this backwards and forwards More joined up, should be a dementia directorate, all services working together. 36

37 Providing more joined up services so that there is reduced duplication, clear roles for each service, saving time and money to focus on a holistic approach to dementia care. Joint working between primary and secondary care settings. A number of respondents felt services would benefit from an increase to funding as this would enable practices and infrastructure to be reviewed and the necessary improvements made (43 comments). If care is going to be in the community then health and social care services will have to invest and put in place BEFORE further reductions take place. Look at what works well in other parts of England like dementia support and see if you can get it here. The services need to be reviewed by the professionals who understand dementia, the needs of the patients and carers, and the quality of services that are required. Inpatient units, and acute care services and delays to transfers of care need improving, in terms of the way they deal with admitting and discharging people living with dementia (37 comments). Prioritise people with dementia to discharge from hospital to home environment with service to support. (Bridport Community Event) Increase training for general hospital staff so that they have a better understanding of the problems someone with dementia may have Provide stimulating environments that are individual to the person hospital wards are soulless and confusing for people with dementia (Family member/carer, work/ have worked with people with dementia in Dorset) Transition from hospital to care home should be simpler and quicker. Keep open the inpatient facilities that are available and stop trying to centralise them into one unit for the whole country. (Family member/carer, work/ have worked with people with dementia in Dorset) Other suggestions for improvements to dementia services include initiating a befriending scheme, more selfhelp groups, memory cafes and day centres, specialist care support and Pets as Therapy voluntary groups. By initiating more befrienders, more self-help groups By providing more memory cafes and day centres run with at least one professional and some volunteers. (Friend of someone with dementia) Priority of social care for those people living with dementia. 37

38 5.3.2 Patient Treatment and Support A large number of comments also highlighted the need for improvements to be made to the treatment and support provided to people living with dementia (247 comments). Figure 13: Patient treatment and support comments Patient Treatment and Support Sub Topics Clearer information provision, public education 91 Improve data sharing & comms, single point of access 56 Consistent & personalised treatment, emotional support Easier access to services. rural vs urban services Variety of appropriate groups & activities Young dementia sufferers 12 One way in which patients and their relatives or carers feel this can be improved is by making information about dementia more available and more easily accessible to them (91 comments). In particular they would like clear advice on what to do or where to go once a person has been diagnosed and advice on how to cope with challenging behaviours. Respondents also emphasised the importance of public education to increase awareness of the initial signs of dementia including what to do if they have concerns about themselves or a relative/friend. Availability and more forthcoming approach to providing information about practical support and available finance/funding. Provide carers with clearer understanding of what services do and which teams are responsible for what. A clearly defined difference between what is available from the GP, NHS provided services and those from DCC would be really useful More joined up working would be really useful, maybe a map or flowchart giving various scenarios. (Family member/carer, on behalf of someone with dementia) Having a much more comprehensive network for unpaid carers and paid carers to give advice on managing challenging verbal and non-verbal behaviour, particularly during OOHs and at night. General communication and data sharing among services throughout the county also needs improving according to many respondents (56 comments). It has been identified that both communication between departments and the way service providers engage with people living with dementia are in need of improvement. It is generally suggested that information should be shared with the person s carer as the patient may forget. There should also be more consideration by professionals over the method of communication they use to contact people, as online communication is not necessarily appropriate for some members of the population. 38

39 Adapting communication to take account of the reality of dementia, so not relying on the person s account of what they can and can t manage; ensuring that appointments are made when relevant others can be there; keeping carers in the loop. Feels that the GP had no knowledge of other intervention that her mother had had. Communication with the GP could be improved. (Kinson Community Event, Carer) Have an option in place from the start of referral to ask who correspondence should be addressed to. Patient experience of dementia care could also be improved by a more consistent and personalised approach to their treatment which focuses on their individual needs and requirements (37 comments). This could be improved by providing better emotional support, staff showing greater sensitivity and understanding in certain situations, and having one point of access for patients and their relatives. By being more focused on the individual needs and requirements of the person with dementia; tailoring care to their needs and circumstances; by listening to and involving the family members/carers who live with and understand these people. (Family member/carer, work/ have worked with people with dementia in Dorset, on behalf of someone with dementia) Generally greater sensitivity and understanding. We can still be articulate. (Person living with dementia) Joined up service for dementia services e.g. a dementia passport so any healthcare service will know about a person with dementia s needs to treat them as an individual. Another theme that was identified was the need to improve accessibility to services and support groups locally and to improve transport links, particularly in rural areas (27 comments). Localised trials for cures for dementia I was sent one trial offer but it needed me to go to London London is neither convenient nor cheap to travel to. (Person living with dementia) Making support easier to reach. (On behalf of someone with dementia) Ideally having beds in Weymouth and Blandford. (Alderney Hospital Staff) The variety of appropriate groups and activities that are specifically designed to accommodate the needs of people with dementia also needs improving; this includes the provision of groups and activities within the community as well as in care homes (24 comments). Provide decent activities in the community for older people. (Family member/carer, work/ have worked with people with dementia in Dorset) 39

40 More activities, singing etc. for sufferers of dementia. Day care provision secure, suitable activities, well trained staff. We find horticulture and green care an excellent activity for those with dementia and can include error less learning, activity analysis to ensure activities match abilities. (Dorchester Community Event) Exercise to improve mental and physical wellbeing, and more concentration and music activities, including in care homes. (Family member/carer, work/ have worked with people with dementia in Dorset) Finally it is suggested patient treatment and support could be improved by providing a specialist service for early onset dementia (12 comments). Workshops and/or support groups for early stage dementia sufferers might be useful. (Person living with dementia) By providing a specialist service for early onset dementia patients and not grouping us with old age dementia patients, who equally deserve their own specialists. (Family member/carer, on behalf of someone with dementia) Gap younger people. (Wimborne Community Event) Support for Carers Another main theme that was identified was the need to improve support for carers (123 comments). Figure 14: Support for carers comments Support for Carers Sub Topics Carers support and respite 104 Carers need to be listened 19 Carers feel that better respite care options are needed to allow them to have a break, as well as providing more appropriate training and support; both of which would enable carers to provide better care for their loved ones in their own home. 40

41 Carer support to have training in dementia. More follow up visits to check carer support are doing their jobs properly. Day care to be offered at least one day of the weekend to give carers a break. With regret my husband is now resident in a care home I feel strongly that respite care is absolutely essential if we are to look after our kin at home. Maybe if this service had been available possibly I would have looked after my husband longer I have always maintained it is the carer who has the diagnosis, and who desperately needs the help and care If you wish to keep more people living independently for longer the care system needs to be more uniformly consistent. Share good practice and perhaps different training for those carers dealing with dementia. Carers also feel they need to be listened to more by service providers, particularly when they raise concerns about a patient or loved one during assessment. Believe the carers we recognise the changes in our partners better than they do. (Swanage Community Event, Wife/carer of patient) Doctors and Consultants also need to listen more to the carers when they voice their concerns re the patient as the dementia patients are very clever at presenting well when being tested or examined. Involve the families of people with dementia, share information where appropriate and work together with them Staff Issues A number of respondents also indicated improvements could be made to overcome some of the issues with staff within different dementia services (82 comments). Figure 15: Staff issues comments Staff Issues Sub Topics More staff, incentives & training 79 Better utilising staff 3 41

42 Respondents feel it is necessary to increase staffing levels, with a particular need for Admiral Nurses or nurses to provide more and longer consistent care, better incentives and improved training. Developments to staff training would improve knowledge and better prepare staff to be able to manage people living with dementia; in some cases specialist training would be beneficial for those who are caring for people living with dementia with more challenging behaviours. Firstly you need to implement better training for all staff, student qualified and nursing assistants. Any care improvement cannot happen if there is no knowledge and understanding of the problems. Care homes must provide training in dementia care. Better OPD services, more doctors and nurse practitioners, more admin staff to process letters. Hospital staff would benefit from dementia training as well as ambulances/ paramedics. Perhaps a dementia lead person will be useful if appointed to support people with dementia during hospital admission/stay in hospital and coordinate/communicate their needs as well as supporting staff. Local offices social workers also need to improve their dementia awareness. Better utilisation of staff is also suggested; respondents commented this would improve patient experience as well as creating better links between service providers, easing pressures on staff. Bring back the personal contact with your own nurse. Take ownership back from the GPs, they are already over stretched. (Person living with dementia, family member/carer) By appropriately staffing comprehensive pre and post-diagnostic services for people with dementia and their carers with staff who have specialist knowledge/experience in working with patients and carers. (Family member/carer, work/ have worked with people with dementia in Dorset) Make better use of the occupational therapists within the area. Occupational therapists are experts at helping people to maximise their function and maintain independence... They are adept at running groups and training others and consequently are a vast knowledge resource that could be utilised to work in partnership with other agencies. (Family member/carer, work/ have worked with people with dementia in Dorset) 42

43 6 Conclusion Respondents covered a wide range of topics, and provided various examples of what has worked well for them, what has not worked and a number of ideas for improvements within dementia services in Dorset. It should be noted that the themes identified are not exclusive, and that all comments should be considered when reviewing dementia service provision within the county. Throughout the themes and comments it becomes clear that while many have had a positive experience of care from services, support groups and agencies, for example by Alderney Hospital, this was not an experience shared by all as others commented on the fragmented approach of different organisations. To overcome this, there is a need for more joint working by improving communication and sharing of data between different services so that people living with dementia do not have to repeat themselves which can be confusing. It is also necessary to address the way services communicate with patients, carers and relatives and the information that is provided to them. There are particular issues with this post-diagnosis, patients often receive little, if any, information from staff, leaving them feeling isolated and confused as to what should happen next. It is also important for carers to have more involvement in care planning where they are listened to by professionals, especially when they raise concerns about the patient. There should also be efforts to raise awareness of dementia in the general public in order to encourage early diagnosis and intervention. In addition, services are understaffed and unable to provide the level of personalised care and support that is required. Increasing staff numbers, with fully trained staff, in hospitals, dementia units and care homes would improve continuity of care which is less confusing for patients. An important issue raised by carers was the need for better respite care options, having more groups or facilities that offer adequate respite car would enable carers to have regular or quality breaks. Allowing carers to have sufficient breaks would improve the quality of care they are able to provide. NHS Dorset CCG and the three local authorities would like to thank all respondents to the online and postal survey as well as the participants in the community and outreach events for providing feedback as part of the Dementia Review Consultation.