Hertfordshire Carers Support and Young Onset Dementia Service – Turning Point

The Herts Carers Support Service provides emotional and practical support to carers of people with mental health difficulties and/ or young onset dementia living in Hertfordshire. The service is designed to complement rather than replace existing respite services.

Co-Production

  • From start: No
  • During process: Yes
  • In evaluation: No

Evaluation

  • Peer: Yes
  • Academic: No
  • PP Collaborative: Yes

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What We Did

The Herts Carers Support Service provides emotional and practical support to carers of people with mental health difficulties and/ or young onset dementia living in Hertfordshire.  The service is designed to complement rather than replace existing respite services.
We provide:
• 1:1 Outreach with carers and service users
• Advice and information
• Telephone support
• Support access practically to other services and support group.
• We provide a weekly Art Club that our service users can attend and give carers the break.
• We also arrange a fortnightly outing for our Young Onset Dementia Clients; these have included visits to Harry Potter Studios, Whipsnade Safari Park and RAF Hendon.

Working together with our clients we design a support package with goals that evolve with peoples changing needs and wishes. We offer high quality support and person centred care that helps individuals decrease their isolation, increase independence, learn new skills and to make the most of every new opportunity.
The service provides an ethos of recovery and hope and will work alongside individuals to build their skills, confidence, self-esteem and coping strategies to enable them to move forward. Our support is person centred as each family will have their own issues and problems living with dementia or caring for someone who does. At present we are supporting 50 people – the client and the whole family providing two hours break from caring role each week. We provide help with benefits, getting carers assessments and signposting to other organisations, which can help as and when their condition deteriorates. When families are referred to us they are usually desperate and little information as to what to expect. We try to ensure that the families stay with our service until the client either goes into a home which we will also support sourcing or in the eventuality that they pass away. The work does not immediately stop there as we continue to support through a period of adjustment for the carer and family until they have adjusted to live without their loved one.

We offer education around the diagnosis and support all the family to work with the condition and give them the tools to help to decrease the impact on their lives. E.g. we have a lending library with information about dementia. We show families communication techniques, mental stimulation exercises and encourage white boards with pictures instead of words to reduce client’s frustrations. This is person centred as each of our clients have a different approach to their condition and as there are a hundred forms of dementia they will all present differently. We offer activities that are fun, require some activity but are primarily mentally stimulating. We arrange counselling sessions for family members and children to help them to cope with what their partner or parent is experiencing. The level of support is increased at times of crisis and this may be due to a transition that is going on or a change of behaviour. We support with appointments and signposting to other organisations that can complement the support the service offers. Sometimes, because of the age group that we work young children are still living at home; we have sourced counselling and therapy to help them understand what is happening.
We provide the families and carers with a forum to express their concerns and we have the tools to get them the extra support they require to understand and deal with watching their loved one change. We enable clients to remain in their own homes when they have lost a partner or they have not got any family at all.

Specific support is likely to include:
• Providing carers with a regular short break from their caring role by spending time with the person they care for so they can take time out.
• Providing carers and family with timely, creative and flexible support to meet their needs.
• Emotional and practical support for individuals and carers
• Support to solve issues including benefits, housing and debt
• Signposting to carers’ services and carers’ support groups
• Onward referral to other services
• Informal support for other members of the family.
• Help to reduce episodes of crisis and support recovery
• Support to access other caring services where appropriate i.e. day services.
• Support to access existing community based services and agencies.
• Help to build confidence, self-esteem and life skills
• Support to create and build new social networks
• Support with boundaries and dynamics within relationships
• Support and education in relation to mental health diagnoses
• Advocacy for carers at meetings and appointments within the mental health system, e.g.at CPA meetings or when they have concerns about the person whom they care for
• Support to access employment advice
• Support to attend important appointments
• Support to access recreational and leisure activities
• Support to navigate the mental health system and ensure that the person they care for is fully supported
• Support to access services for physical health care
• Promoting healthy living through support with exercise and diet.

Wider Active Support

The service works alongside and complements the work of the following organisations:
o Community Mental Health Teams
o EMDASS (Early Memory Diagnosis and Support Service)
o NHS/ GP surgeries / OT
o Alzheimer’s Society
o Carers in Herts
o Crossroads Care
o Local Carers Groups
o Hertsmere Action Group

Co-Production

The service is truly person centred, our clients and their carers have a say in what level of care we provide and this is holistic in nature. This can be evidenced through our person centred support plans, wellbeing assessments and quality assurance forms. Some of our carers like to be involved in all the activities we provide for the client e.g. the Art Group teaches skills such as knitting and putting together memory books. Some of our previous carers have remained in contact after losing their partner, because not only have they enjoyed the service and the interaction, they still want to be able to offer their support to existing carers wherever possible. We are looking to put together a long term support group for our carers.

 

Looking Back/Challenges Faced

Although the team are very passionate about the service they provide, there is recognition that we cannot do everything ourselves. We are keen to work more closely in partnership with other agencies such as EMDASS, Age UK and the Alzheimer’s Society; this would enable us to reach more individuals.

 

Sustainability

Feedback received demonstrates the service is not only highly regarded but most sought after. As explained in the previous question, we seek to work more closely and in partnership with other agencies in order to replicate the model we use across Hertfordshire. Given the need for our service, expansion is necessary and with this, the need to access capital through different funding streams. Locally Hertfordshire County Council is launching an Innovation Fund which we plan to access.

Evaluation 

The Herts Carer Support & YOD service were recently visited by that National Team from Public Health England who were so impressed that they want to replicate our model across the country. Our work can be judged by the quality of the service delivered and quality of life enhanced to the carers and people that we support.

Herts Carer Support delivered the following between 1 April 2015 – 31 March 2016
• The Carers Support Service has worked with 82 one-to-one cases (40 carers and 42 service users)
• The Art Group has provided 187 sessions of additional support (each consisting of 2 hours)
• The YOD Group has provided 168 sessions of additional support (each consisting of 4hours)
• There were a total of 52 active cases as of 31st march 2016 (25 carers and 27 service users)
• There have been over 20 referrals to the service. We are currently operating with a waiting list as the service is over subscribed.
• 1,388 planned face-to-face interventions have taken place.
• 1090 visits with service users, enabling a carer to have a break.
• 298 visits with carers to provide direct support to the carer.
• 702 phone calls with service users and 169 phone calls with carers .Most of these have been to provide additional emotional support between planned visits.
• 556 phone calls with professionals.
• 20 full assessments have taken place.
• 8 service users and 8 carers moved to being supported by a Recovery Worker in the team as they no longer needed the intensive support that the Project Worker provided.
• We have supported 82 service users and carers this year to attend physical health,
Mental health, social care, other community/voluntary organisation, recreational/leisure, education/learning, employment, housing or finance appointments.
• 125 Support Plan goals were reviewed and 66.4% of the goals were fully met.
YOD service delivered the following between 1 April 2015 – 31 March 2016
• The YOD service has supported 66 individuals (32 carers and 34 service users).
• 885 planned face-to-face interventions have taken place.
• There were 168 sessions of support (each consisting of 4 hours) provided through the fortnightly YOD Group.
• 681 phone calls with client/carers. Most of these have been to provide additional
emotional support between planned visits.
• 215 phone calls with professionals.
• 13 full assessments have taken place.
• We have supported 73 service users and carers this year to attend physical health,
mental health, social care, other community/voluntary organisation, recreational/leisure,housing and finance appointments.
• 112 Support Plan goals were reviewed and 75% of the goals were fully met.

Outcomes

One particular client, KK, was referred to the YOD service back in March 2014 as he had been diagnosed with Young Onset of Dementia. KK lived with his wife at the time of referral. KK used to be a scientist before his diagnosis however neither of them had a very good understanding of the diagnosis at the time so were confused and upset. Sadly, in January 2015, KKs wife died after several admissions to hospital. It was not practical for KK to move in with a growing family but at the same time he really wanted to stay in his own home with all the familiar things around him. Live in carers were arranged so KK could stay in his own home which was his biggest wish. Our teams worked closely with KKs family and live in carer which provided continuity. KKs life is more fulfilling and happy because he is in his own surroundings and he attends all the groups that we offer and now has a good network of friends that are also very supportive to him.
Another client is at the early stages and we have liaised with his employer to enable him to work part time. This has enabled the client to maintain his wellbeing and feeling of self- worth as he continues to contribute.   Most of our service users and carers comment regularly, thanking us for our support in what can be an extremely confusing time.

 

Sharing

We are keen to share our work and regularly run talks at carers groups and GP surgeries. We attend the Alzheimer’s carers meetings and distribute our leaflets to community settings. We attend various community event to disseminate information and raise awareness and the profile of the Carer Support and Young Onset Dementia Service.

 

 

 

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