Dementia Carer Voices Survey The Caring Experience In February 2013, the Dementia Carer Voices project launched a survey which provided a platform for carers across the country to share their experiences of caring for someone with dementia. The survey was closed on 31 st October 2014. This report summarises the responses that were gathered, drawing out key messages and lessons identified by carers themselves.
TABLE OF CONTENTS EXECUTIVE SUMMARY... 2 METHODOLOGY... 3 RESULTS... 4 RECOMMENDATIONS... 15 CONCLUSIONS... 15 APPENDIX A Survey Text... 16 1
Executive Summary In February 2013, the Dementia Carer Voices project launched a survey which provided a platform for carers across the country to share their experiences of caring for a loved one with dementia. Key areas examined by the survey include: Experiences of accessing support and services Carers needs and the impact of caring on quality of life Advice for fellow carers/ health and social care professionals Profile of respondents/ individuals they care for Interventions that would make their experience as a carer more positive. The survey saw the emergence of several key themes that carers identified: There is still a general lack of understanding about dementia and what it means to be a carer, including self identification of carers, which often prevents people from accessing supports and services. Isolation and loss of identity remain an issue for many carers, with respite and peer support groups being cited by many as a vital support to keep carers well. Information about dementia and caring needs to be more readily available. The most common piece of advice for carers was to take the time to look after themselves. The most common piece of advice for health and social care professionals was to listen to carers and use their knowledge to ensure the best care for the person they look after. The survey was closed on 31st October 2014. This report summarises the responses that were gathered, drawing out key messages and lessons identified by carers themselves. 2
Methodology Survey Results The survey, launched in February 2013 was conducted via an online self-completion questionnaire, distributed through online channels including social media networks and e-newsletters. Hard copies of the survey were given to a number of Carer support groups for completion. The survey closed on 31 st October 2014, with a total of 160 respondents completing the survey. Key areas examined by the survey include: Experiences of accessing support and services Carers needs and the impact of caring on quality of life Advice for fellow carers/ health and social care professionals Profile of respondents/ individuals they care for Participants A total of 160 participants responded to the survey. Of these 160, 64 lived in Scotland, 41 lived in England, 2 in Wales and the remaining 53 did not disclose their location. Data Collected The survey collected two forms of data: Qualitative: Qualitative data including participant comments on their experiences of caring for a loved one. Quantitative: Quantitative data including the duration of the caring journey and profile of the participants. The complete list of questions can be found in Appendix A. Profile of respondents/individuals they care for Nearly 70% of carers who responded to the survey were between the ages of 45 and 64. Over 80% of carers who responded to the survey were female. 3
The majority (63%) of respondents were caring for a parent, followed by those caring for a partner (20%). 35% of carers who responded had been carrying out this role between 3 and 5 years, followed by 10 or more years (20%). 37% of respondents were living with the person they cared for. 4
Experiences of accessing support and services This section asked for carers views about the quality of support and services they had accessed. The time taken to receive a formal diagnosis varied but a third of respondents (32.26%) reported waiting over a year. A total of 42% of respondents did not obtain a formal diagnosis for 7 months or more, with a further 15% who have not yet obtained a formal diagnosis. Of those who had obtained a formal diagnosis, 44% did so within 6 months. Respondents living in Scotland reported different rates of diagnosis than those in England. 54% of respondents living in Scotland reported a waiting time of 6 months or less, compared to 48% in England. Waiting times of more than 6 months were evenly matched at 39%, with 14% of respondents in England still awaiting diagnosis when they completed the survey, compared to 6% of those in Scotland. Lack of information after diagnosis was highlighted as an issue for many respondents with 54% reporting that the level of information they received as either below average (21%) or very poor (33%). 5
A further 31% identified the support as average, whilst 9% described this as above average and 6% responded that it was excellent. Overall, there was a general consensus that the levels of information and support needed to be improved. In a sample of exclusively Scottish respondents, the level of support provided was a key issue. Over the period of the survey, 64% of the respondents stated the support they received was very poor or below average, and that they did not get the information they needed. 18% identified the level of support and information they received as above average or excellent. This reinforces the clear need for support following diagnosis. The Scottish Government s Post Diagnostic Support guarantee 1 was introduced during the period in which the survey was being conducted, but given the time frame it is unlikely that the survey picked up sufficient numbers of those who would have qualified to make analysis statistically significant. That having been said, focus group and other work conducted by the ALLIANCE, continues to reflect that Carers need more support and information. A comparison with respondents from England shows a similar picture, with 51% of respondents identifying the levels of support and information as very poor or below average. Those identifying the support they received as being above average or excellent made up 16% of responses from participants living in England. 1 As set out in Scotland's National Dementia Strategy 2013-2016 (Scottish Government) 6
There remains a discrepancy between the level of information and support that is currently available, and the level of support and information that carers have identified as meeting their needs. To identify good practice, carers were asked to identify What sources of support do you feel make a positive difference to you in caring for your loved one? The replies covered a range of services, with many carers describing family and friends as their main support. Specific services were also identified as sources of support including; Alzheimer Scotland Carers support groups Local GP Respite care Online Communities (Support Groups and Forums) Admiral Nurse Over and above a particular professional or specific service, however, the most common source of support cited by carers was dealing with individuals who understood dementia and appreciated what their caring journey entailed. The support from other carers has been my lifeline. As of yet, the only real support I get is from strangers who I find online who are going through the same thing that I am. Education and understanding. Understanding. Being informed & offers of help rather than been left to find it myself. Other family members. Caring professionals who were experienced in dementia care and were able to empathise and be compassionate. An overwhelming majority (79%) of carers stated that others did not understand or appreciate the issues they had to face as part of their caring role. It would therefore appear that raising awareness of the caring journey and of dementia is a key priority in order to support carers in their everyday lives. Initiatives such as Dementia Friendly Communities offer a great example of the role that everyone can play in making their community more supportive and a better place to live for everyone, often using the motto dementia is everyone s business. Indeed, this was behind Dementia Carer Voices You Can Make a Difference campaign; we can all have a positive impact in the lives of people with dementia, their families and carers by listening and identifying ways to make the caring journey more manageable. In order for this to happen, greater recognition of carers and their voice must become routine. 7
A separate question asked respondents to identify sources of information about available sources of support. GPs, Community Psychiatric Nurses and Carer Support Groups were the most frequently cited. These reflected the services identified as providers of support. In order to inform improvements, respondents were asked Can you think of any interventions which would make your experience as a carer more positive. The most commonly identified area for improvement was an increase in the level of information and support provided at the point of diagnosis and beyond, from practical tips about the day to day activities of caring, to information regarding financial and legal matters. Information about Alzheimer's, how it affects the person and carers. What can be done to help in the best way For support and information on EVERY aspect without having to fight for it when you eventually discover it as info was not forthcoming. The issues of receiving adequate information post diagnosis and having a named link worker to co-ordinate support is being addressed through the Scottish 8
Government s Post-diagnostic Support Guarantee 2 for people receiving a diagnosis of dementia. Since the survey began, there has continued to be a theme of lack of information being one of the biggest issues facing carers, as previously outlined. This may be in part due to the time taken to obtain a diagnosis, with nearly one third of respondents waiting over a year to obtain a formal diagnosis. Carers have identified that they would benefit from more consistent, longer term support. Work is currently underway to address this, through the 8 Pillar Model of Community Support which is currently being piloted in five test sites in Scotland. 3 This includes the addition of a Dementia Practice Coordinator, who provides an individualised approach to lead the care, treatment and support of the person and their carer. The survey responses highlight the need for continuous support to provide carers with information, helping them navigate through services and supports, legal capacity issues such as power of attorney, through to end of life care and bereavement. Ongoing support on an individual level was identified as a key change that would benefit carers. In particular, training for carers was consistently identified as something they would benefit from. Training for carers on what to expect or try to be prepared for with behaviours. I just wish someone would be assigned to call me every so often to ask if I need help. It should be part of the treatment plan. Additionally, staff training on dementia which included carers was highlighted as an area which could be improved upon. Furthermore, becoming more person-centred was also a recurring theme that respondents would like to see embedded. Be needs led instead of service led as this causes so much stress to myself as the carer. To talk to all agencies involved in a sort of ' team around the person' meeting where we can all be heard and listened to and where one person becomes the point of contact. 2 Ibid. 3 More information available at www.alzscot.org/campaigning/eight_pillars_model_of_community_support 9
Carer s needs and the impact of caring on quality of life The questions in this section looked at the impact of caring on the carer s quality of life. Survey responses identified significant impact on quality of life for carers and in particular a common perception that others do not understand or appreciate the challenges they face. Many respondents also cited their mental wellbeing suffering due to stress and isolation. The relentless nature of demands on time and difficulties in managing other aspects of life were highlighted as well as the emotional strain of coping with the changed relationship with the cared for person. Carers were asked to identify In your opinion, what are the biggest challenges you faced in caring for a loved one living with dementia? Workload/Time Commitment Time management was an issue for me, I had not time for myself, I was so tired and run down I no longer have any time to call my own. Lack of sleep. Caring for someone with Alzheimer s becomes a 24/7 job Challenging/unpredictable behaviour Dealing with feelings of anger over loved one s behaviour Not knowing what each day will bring and how you are going to handle it Coping with the change in personality, from my dad being a parent to be relied upon for support to someone who needed on-going support. Feelings of grief and loss. Watching them change as a person, having to understand, watching them forget things, seeing their frustration. Losing the father I knew for so many years, especially now he is no longer at home and in hospital. Their loneliness Professionals lack of sensitivity to individual situations/circumstances Not feeling listened to Lack of understanding/interest on the part hospital & social service staff. Healthcare workers are not caring enough about dementia patients. 10
Lack of Post Diagnostic Support Not enough knowledge ourselves and others of what is available to support us and how to access it. What can best help our loved one maintain as much of themselves as possible. Lack of support and sharing of knowledge No one kept us informed - all out of our hands. Respondents were asked In what ways does your role as a carer impact on your quality of life? Worn down/time commitment Exhausted mentally and physically Constantly have to be there for them. Dealing with being told the same thing a 100 times a day It's exhausting and worrying. Social isolation/impact on personal relationships I can't socialise, don't have friends who can drop in. Stress. Isolation Insomnia. Loss of social life Impacts a lot - social life, mental health Guilt/resentment There s the immense guilt for feeling so resentful. We're always thinking we should be there for her as there's no one else The guilt has taken me a long time to deal with and I had to have counselling. Now my father is in hospital I realised how many things I wasn't doing for me Balancing work and caring responsibilities As I have a very demanding fulltime professional job, and no other family, I struggle immensely being my mother's only carer The guilt of not being able to provide direct care, whilst continuing to work weighs heavily Had Career Break from job. No money, social life, isolated. Mental wellbeing It has brought my depression and anxiety back, and my life is consumed by caregiving Suffering anxiety & depression. Had 4 months off sick with depression A great increase in stress, I've been diagnosed with anxiety and depression. 11
Advice for fellow carers / health and social care professionals This section asked carers to draw on their experiences in order to provide advice they felt would be beneficial to; 1) Fellow carers who find themselves in a similar situation. 2) Health and social care professionals who work with people with dementia and their carers. By far the most common message that respondents looked to impress on fellow carers was the importance of maintaining their own health and wellbeing as far as possible, and seeking out sources of help and support early on to avoid reaching crisis situations. Joining a local carers support group was another popular recommendation, reflecting responses to previous questions which identified the value carers place on peer support and shared experience. Respondents also consistently encouraged carers to fight for their rights and those they were caring for. When asked What is the most important piece of advice you would like to pass on to fellow carers? responses included: The importance of asking for help/peer support Join a support group, be good to yourself, and get outside help immediately so that your loved one will get used to it from the start Join a support group and accept help from all who offers You must preserve yourself - ask for help when required not when on the point of breakdown Take time for yourself. Don't be afraid to ask for help. Being informed Be well informed, know your rights. Do not be afraid to ask questions. The more you understand about the illness and also your rights when caring for a relative makes all the difference Don't give up demanding. It's your right! Carers wanted to encourage health and social care professionals to see the person with dementia as an individual, rather than focusing on their illness or abilities they may have lost. Recognising and respecting the individual s unique personality and life experiences was seen as a critically important aspect when providing care and support. Comments also stressed the importance of professionals recognising that carers are experts, with skills and insights that are to be valued and harnessed. 12
When asked What is the most important piece of advice you would like to pass on to those working in health and social care? responses included: Engaging carers as equal partners in care Listen to the carer Carers need to be fully involved in the commissioning of services, it's our lives, we can be part of finding solutions. Social workers need to start listening to carers and family and realise that family know best. Don't make Carers fight for help they get... It's hard enough without a battle as well! Person centred care Everyone is individual and there needs are different. Treat me with care and warmth, respect and dignity. I am a person and was once like you. Listen to the carer and work at their pace Please think of your patients as your own relatives and think of what happens next for them See each dementia sufferer as an individual with a life full of memories & their own personality, beliefs & feelings. Recommendations The survey had a variety of open questions where respondents were encouraged to share as much or as little as they felt comfortable with. This allowed us to capture real life examples which show the nuances and smaller changes that can make a bigger difference. The recommendations are therefore based on the most commonly expressed themes from the qualitative and quantitative data gathered, and the interventions that carers have expressed a need for. Responses to the survey have produced the following recommendations: 1. There must be more information and support given to carers throughout their caring journey. This was consistently identified throughout the duration of the survey, and must be a key focus of work going forwards to ensure that the 788,000 carers and young carers in Scotland are being supported to undertake what can be an incredibly demanding role. 13
2. Training for staff is a key priority there is a general lack of awareness about dementia and therefore how to best care for someone with dementia. This also means that there is less awareness of how best to support people with dementia and their carers in acute settings and beyond, including in the community. Staff should feel confident in signposting carers to local sources of support such as carers centres and respite facilities, through finding out what keeps people well. A shift towards social prescribing utilising community assets through resources such as ALISS (A Local Information System for Scotland), 4 and learning from the Links Worker Programme 5 would be beneficial in driving this agenda forward. 3. A person centred approach is required at all times and should be the standard of care provided for all individuals. Finding out what is important to people and what helps to keep them well should be the foundation of all support offered to keep people well in their communities. 4. Carers should be recognised as equal partners by health and social care professionals, who bring an unmatchable level of expertise on what the person they care for likes and dislikes, who they are, and what is important to them. 5. Carers should also be recognised as individuals by health and social care professionals, who have their own independent lives and their own needs which are of equal importance. Carers should be supported to keep well so that they may continue to care for as long as they choose to, without jeopardising their own health and wellbeing in the process. 6. Carers rights must be respected at all times. This means positive duty that must be discharged by authorities, including via the distribution of information on what carers are entitled to, such as advocacy, to ensure transparency and ultimately provide the best outcomes for carers and the people they support. 7. Peer support remains the most consistently positive source of support, along with family and friends, largely due to the level of understanding that is shared. Whilst a diversity of approaches is necessary, and there is no substitute for having conversations to find out what supports people feel they would benefit from, and a level of understanding is crucial for carers to feel supported. 8. Performing a caring role whilst in employment remains a difficult balance to strike. Employers must become more flexible and proactive in ensuring that 4 A Local Information System for Scotland (ALISS) is a search and collaboration tool for Health and Wellbeing resources in Scotland. It helps signpost people to useful community support, and with an ALISS account people can contribute the many and varied resources that our local communities have to offer. More information is available at www.aliss.org 5 The Links Worker Programme is a Scottish Government funded programme which aims to explore how the primary care team can support people to live well in their community. The programme brings together the worlds of primary care and community development through a new, full-time, specialist role, the Community Links Practitioner joining the existing primary care team. More information is available at www.alliancescotland.org.uk/what-we-do/projects/linksworkerprogramme 14
employees are supported to both work and care, and should embed good practice such as the Carer Positive framework. 6 Conclusions To conclude, the findings of the report have highlighted some pockets of good practice along with areas for improvement. There is an overwhelming consensus that the current level of information and support falls far below what it should be, and indeed what was envisaged by the Scottish Government in Caring Together: The Carers Strategy for Scotland 2010-15 7. There are currently an estimated 759,000 carers and 29,000 young carers in Scotland 8, with a predicted 800,000 people in Scotland expected to become unpaid carers in the next five years. 9 It is imperative that we drive improvements to support carers in performing their invaluable role. This must involve, recognising carers as individuals, co-producing aims and outcomes on a continuous basis, and learning from lived experience to ensure that the carers are supported, respected and understood at all times throughout their caring journey. 6 Carer Positive aims to encourage employers to create a supportive working environment for carers in the workplace. More information is available at www.carerpositive.org 7 Available at www.gov.scot/publications/2010/07/23153304/0 8 Scottish Government figures, available at www.gov.scot/topics/health/support-social-care/unpaid-carers 9 Facts about Carers (2014) Carers UK 15
Appendix A Survey Text A total of 22 questions were asked in the survey, the complete list of which can be found below. Quantitative data derived from the survey have been included. Respondents were able to select more than one option in order to reflect their caring experience more accurately. 1. Which of the below options do your comments/experience most closely relate to? Care at home/ community 83% Care home 17% Psychiatric ward 5% Hospital care 12% 2. How long did it take to obtain a formal diagnosis? 0-4 Weeks 6% 1-3 Months 20% 4-6 Months 17% 7-11 Months 10% 12 + Months 32% Have not yet obtained formal diagnosis 15% 3. How would you describe the level of information and support you were provided with upon obtaining a diagnosis? Excellent 6% Above average 9% Average 31% Below average 21% Very poor 33% 16
4. In your opinion, what are the biggest challenges you face in caring for a loved one living with dementia? 5. In what ways does your role as a carer impact on your quality of life? 6. Do you feel that others understand/ appreciate the issues you face in providing this care? Yes 22% No 79% 7. What particular sources of support do you feel make a positive difference to you in caring for your loved one? 8. How did you become aware of these? GP 33% Community mental health or community psychiatric nurse 38% District or community nurse 10% Physiotherapist 6% Alzheimer Scotland 25% Carer support group 11% Other (please specify) 2% 9. Can you think of any interventions (for example- service improvements, staff training, information or support provided) which would make your experience as a carer more positive? 10. What is the most important piece of advice you would like to pass on to fellow carers? 17
11. What is the most important piece of advice you would like to pass on to those working in health and social care? 12. What is your age? 16 24 2% 25 34 5% 35 44 12% 45 54 42% 55 64 26% 65 74 11% 75 + 2% 13. What is your gender? Female 82% Male 18% 14. What is your relationship with the person you care for? Spouse/ partner 20% Daughter/ son 63% Brother/ sister 2% Grandparent 4% Other relative 14% Friend/ neighbour 2% 18
15. For approximately how long have you been providing care? Less than a year 9% 1 5 years 53% 6 15 years 34% 15 years or more 4% 16. On what basis do you care for your relative/ friend? Full time 47% Part time 57% 17. Did you have to alter your employment circumstances to provide this care? Yes 57% No 44% 18. What age is the person you are caring for? 45 54 2% 55 64 9% 65 74 22% 75 + 70% 19. Does the person you are caring for live with you? Yes 37% No 63% 20. Please indicate the postcode of the person you care for 21. Name (Optional) 22. Email address (Optional) 19
About Dementia Carer Voices Dementia Carer Voices is a project which uniquely combines promoting the Rights of People with Dementia and their Carers with the lived experience, recognising the importance of the Carer Voice in informing future service provision. About the ALLIANCE The ALLIANCE is the national third sector intermediary for a range of health and social care organisations. The ALLIANCE has nearly 900 members including large, national support providers as well as small, local volunteer-led groups and people who are disabled, living with long term conditions or providing unpaid care. Many NHS Boards are associate members and many health and social care professionals are Professional Associates. The ALLIANCE s vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre. For Further Information about the survey and its results please contact Director Irene Oldfather Irene.Oldfather@alliance-scotland.org.uk Twitter @alliancescot @dementiacarervo @ireneoldfather 0141 404 0233 Policy and Information Assistant Sarah McDermott Sarah.McDermott@alliance-scotland.org.uk Twitter @SarahRMcDermott Our other team members are Tommy Whitelaw Engagement Lead Tommy.Whitelaw@alliance-scotland.org.uk Twitter @youcanmakedifference Laura McCulloch Administrator (for further copies) Laura.McCulloch@alliance-scotland.org.uk Twitter @LauraMcC86 20