Dementia Support for Carers
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- Lead Organisation
East Riding Carer Support Service
- Project contact
Elaine Holtby
Having the right support when you need it is very important. Many carers of someone with a dementia can support the person they care for to live independently for several years to live at home and enjoy life. When things get challenging or difficult an experience worker would work alongside carers and their families giving them one to one support, expert guidance and practical solutions.
The specialist Dementia Carer Support Officer role includes:
• Provision of specialist information and understanding of the carer/cared for needs.
• Support to people with early onset dementia and their carers as it is important to recognise this pathway and associated support requirements are very different.
• Provision of Getting Along intervention and access to courses specific to understanding dementia and support a loved one with dementia.
• Condition specific groups for carers supporting someone with Dementia.
• Provide an opportunity to talk about their experiences, offer support and practical problem solving.
• Supporting carers to be aware of their own needs and well-being, in order to effectively support the person that they care for.
• Support carers as they can feel anxious, stressed, struggle to understand the illness, feel frustrated, angry and guilty.
• To work closely with the Co-production lead and strategy coordinator within the local authority in delivering the priorities as set out in the mental health and dementia strategy and the carer strategy.
- Project duration
January 2023 – January 2026
- Key beneficiaries
Carers of someone with dementia
Dementia Support for Carers
Why we started this initiative
Looking after someone with dementia can be a 24-hour a day job, and carers often feel guilty because you are tired and flagging, or simply not able to be with the person every minute, day and night.
There are 700,000 people in the UK who care for someone with dementia, who are mostly unpaid and collectively save the UK economy £11.6 billion per year.
Nine in 10 carers for people with dementia experience feelings of stress or anxiety several times a week – and a further 80 per cent find it difficult to talk about the emotional impact of caring.
Our goals
East Riding Carers Support Service have 2 x specialist Dementia Carer Support Officers who;
- Provide Carers of people with Dementia and support through a range of services.
- Coordinate support to dementia carer support groups.
- Identify eligible carers and assist in the identification of carer’s needs.
- Encourage take up of carer assessments.
- Develop information systems and literature.
- Support the involvement of carers in local mental health development and planning to ensure their active participation and influence in modernising mental health services.
- Provide training and development of other staff in knowledge and understanding of dementia.
- A steering group was developed and carers really engaged in this.
- Training and information sessions were held on topics identified by carers.
- Opportunities for carers to be truly heard.
- Asset based resources developed by carers using their own skills including films, a leaflet and potential for a book.
- Exposure to the media using local radio and television.
- Marketplace event to gather all relevant agencies together.
- Recognition by other agencies.
- Groups continue, with carers feeling ownership of these and guest speakers regular suggested by carers themselves.
Outcomes
There are many different outcomes depending on what the carer is wanting to achieve for themselves and the person they are providing care for. It is very individualised, and the assessment helps us to identify together with the carer what is important to them. We have core offer services which we can suggest but there is so much more that can be put in place to support any unmet outcomes. For example:
- Support a carer to do the things that they want to achieve and what is important to them i.e. continuing to work, have time with family and friends, engage with the community.
- Support with future planning, making sure the carer is well informed of what support is available and how this can be accessed as and when. We promote self-reliance by giving carers the tools and confidence to achieve this.
- Ensure that carers are claiming the benefits that they are entitled to therefore making them better off financially. This is accomplished by making referrals to DWP and or the East Riding Your Money team. This then can support with transport and technology (lifeline, Komp, Buddi) etc.
- Referrals to adult social care and an explanation on how to access care (day services, personal assistant, care package, respite and urgent respite and residential care if required) when under the capital threshold and if over the capital amount, what to expect.
- Provide support in many other ways which supports their mental and physical health, this could be signposting to services in their area for example Fit Mums, walking groups etc.
- Referrals into the NHS Talking Therapies, Passport to Leisure Card which enables the carer to gain subsidised access to all East Riding Leisure services.
- Carer peer support groups which run at the same time as groups for the person cared for, (collaborative working with other external services) so they have a safe space to talk and gain support from those who understand and are living with the same diagnoses.
- Information about how to apply for a blue badge, where to obtain a Radar key, council tax discount, what happens in the event of an emergency and what support is out there and what number to call etc.
Carers focus on the well-being of the person they support and their own issues and emotions are ignored.
To date the Dementia Carer Support Officers have supported over 250 carers in the East Riding. The role has proved to be invaluable to carers caring for someone with dementia.
Carer support group development has been a challenge due to the limited ability for the carers to leave the person cared for. Therefore partnership working with other support groups and organisations (Innovations in Dementia) have been successful giving carers a voice and peer support.
Ongoing support is very much needed as carers once a diagnosis have been given they often feel alone and left on a cliff edge as described by carers themselves. Face to face meetings has played an important role to build relationships and build trust which opens up honest conversations.
A directory of advice and guidance to support a carer who has received a recent diagnosis has been developed. This give the carer the tools to be more independent when looking for support and guidance which can be very daunting.
The learning has also brought to the forefront how important it is for other both internal and external services to have the knowledge and understanding of the impact on carers and the person that they care for. Also giving tips on how to manage every day life within the home and outside.
To date the support officers have supported 300 carers who are caring for someone with a dementia.