The CARIAD service, or Care and Respect in Advanced Dementia, is for people with a dementia diagnosis who need specialist palliative care (‘cariad’ also means ‘love’ in Welsh). The service supports patients who have complex needs, aiming to keep people living independently with dementia for as long as possible. It also provides support for carers.
The CARIAD team is led by a social worker and includes a nurse and two healthcare assistants. The service has a non-pharmacological approach, using a range of techniques to help patients and carers to cope with symptoms and solve problems. This might include using assistive technology such as interactive cats to help calm a person down, or setting up a camera so that carers can check on their loved one if they have to be left home alone.
The team provide regular group activities:
A weekly group where patients and carers can take part in purposeful and stimulating activities such as music therapy, gardening or art and get peer support
An anticipatory grief and ambiguous loss group, which supports carers and family members over a 6 week period, during which time topics such as future planning, self-care and the dying process are covered
Therapeutic photography sessions
Day trips to places and areas that have significant memories attached to them.
CARIAD also provides free dementia awareness sessions for carers, schools and places of work. A more comprehensive day course called ‘Dementia; a palliative perspective’ is provided as part of the education programme for local health and social care staff.
Outcomes
On average, there are 40-45 people on the case load for CARIAD at any time. People can self-refer or be referred by other services. Most of the people on the caseload are assessed as having complex needs and being in the unstable or deteriorating phase of illness.
CARIAD has strong links with other local services. Healthcare assistants (HCAs) are qualified social prescribers and assess each individual’s needs, signposting or referring them to other sources of support as appropriate.
A key part of CARIAD’s work is Advance Care Planning (ACP). The skilled team members are able to have discussions about ACP with patients and families at an appropriate time and assess mental capacity as necessary. Discussions are person-centred, looking at each individual’s needs and wishes and how this matches the care available in the local community. They also support with Legal Power of Attorney applications, particularly for people who can’t afford to pay for a solicitor.
Social Care Wales highly commended the CARIAD team for their work supporting people who live with dementia at Y Gwobrau (The Accolades) awards 2022.
Facilitators, challenges and advice
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Key facilitators
Initially CARIAD’s focus was on Advance Care Planning (ACP) but this has developed over time as the team’s expertise at supporting people with more complex needs has become clear. This is partly because the team are able to spend more time with patients and carers than other healthcare professionals, building up a relationship and being able to understand individual needs.
Being social worker led means that the team has a slightly different point of view to other healthcare services and is able to focus on non-pharmacological solutions.
The team is multidisciplinary and team members have been able to build on existing contacts to help form strong relationships with a wide range of local services. They are a part of the weekly multi-disciplinary team meeting (MDT).
Challenges
During the COVID-19 lockdown, people with a dementia diagnosis and their families often needed extra support.
Although CARIAD continued to visit people’s homes (using full protective equipment) the group activities moved online. However, several patients didn’t have the necessary technology at home to take part. The hospice’s Welfare Rights Advisors helped people to access technology and CARIAD loaned tablets, but people didn’t always know how to use them. For some people with dementia, it was quite unsettling to be on a video call that they didn’t fully understand.
The team often went to people’s houses to help them set up for a video call. They also worked creatively to improve people’s experience of the online services, for example by setting up an online afternoon tea and providing all the participants with food and drink.
During lockdown, CARIAD was the only service that continued to visit people at home. Although the restrictions have now been lifted, several local services have not restarted their face-to-face activities. This means that CARIAD’s face-to-face services have become even more in demand, effectively becoming the eyes and ears of some statutory services. The challenge going forward is to use these working relationships to help deliver a more joined up system for local families.
Tips and advice
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Always find out what the patient and their family need, don’t make assumptions or rely on referral forms that might not have been filled in correctly. Utilise conversations about “what matters most?”
Technology and innovation can be used with really positive effects, but this needs to be done appropriately depending on the patient and family’s situation. There is no ‘one size fits all’.
It’s vital to maintain good relationships with other services – focus on supporting each other and don’t criticise other services if there is a gap in provision.
Carers need ongoing education. When their loved one is first diagnosed, there is a lot to take in so messages need to be repeated. Don’t be afraid to talk to carers about topics such as the dying process – if done sensitively, it’s really important for carers to have this information.
Future development
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CARIAD has recently received funding to scope and provide a service for people diagnosed with early onset dementia (aged under 65). People with early onset dementia are likely to have different needs to other dementia patients, for example they might deteriorate more quickly and lose communication. They could also be working or have younger children at the point of their diagnosis.
CARIAD is also working with Cardiff University as part of the IMPACT (Improving Adult Care Together) programme, which aims to bridge the gap between research and practice. The aim of this project is to develop and pilot decision aid tool for carers.
