Changing the system and building your support team
Everybody seems to agree on the importance of person-centred care, of services that enable people to go on living as much as they can the life that they wish.
The leading professional bodies also stress the value of the environment of family and community. That implies teamwork and continuity of care, whether a person is at home, in residential care, or in hospital. It means providing the right kind of focused support for the primary caregivers.
‘Those with dementia and those who look after them form a partnership’ with a strong interpersonal character. So the supporters have an important role to ‘create the atmosphere in which [the person with] dementia flourishes’. But this also means that ‘the supporter needs supporting too, right from the beginning.’ (John Killick, Dementia Positive, Edinburgh: Luath Press Limited, 2014, pp 17, 26)
So the priority for the ‘professionals’ must be, wherever possible, to provide a dedicated team to give personally focused support to the primary caregiver(s), as well as to the person living with dementia, whether in their own home or in a residential care home.
The team will work with them to provide the most appropriate support from the range of services available. This could include carers, drop-in sessions, day care centres, music groups – whatever works for them.
We have described this in the post ‘Person-centred care: models that work’. You can read it here.
The idea of a team like this may seem to be common sense, even if a bit ideal. In fact, most professionals agree that this approach is the way forward. The challenge is how to make it work, because it cuts across existing structures and ways of working. Changing them will be a challenge.
For example, who will set up this team? Some suggest that the GP is best placed to coordinate such a team. Others point out that there are great variations in what GP services can provide. From our personal, limited experience, it is not realistic to expect GPs to provide this service, especially as the pressures on them increase. We definitely need a different model, with specialist teams set up for this purpose.
But whatever changes may (or may not) come in the system, you need to work now to build up your own support team.
This takes time and hard work. It was not enough for us to rely on the services of CLCH, excellent as they were. We also needed carers, friends, physiotherapists and others to help and support. We would have been completely lost without them. It took several months to build up our team: finding what was available, making contacts, asking friends, trying people out, discovering what worked.
It’s also important to be willing to receive help and support. This is never easy, either for the person living with dementia or for the caregiver. But you can’t carry the burden alone. So very early on you need to adopt the mindset that you need to build up a support team. You are going to need increasing support, and the person living with dementia also needs to have people with whom they can relate with confidence and ease, so that when things do become more difficult they are there to provide that support. It won’t just depend on one person, who could find themselves overwhelmed.
Dr William Cutting mentions the value of family, church, societies, clubs, exercise, dance and music clubs to provide further levels of support (William Cutting, Dementia: A Positive Response, Exeter: Onward and Upwards, 2018, p 84).