The Mental Capacity Act (2005) provides principles, procedures and safeguards to support people to make decisions for themselves wherever possible, focusing on the rights of people to be independent and at the centre of decisions about them. The more recent Care Act (2014) places obligations on local authorities to ensure that people can exercise individual control and choice, with particular attention to the individual’s views, wishes, feelings and beliefs.
Assessments, outcomes, plans and actions must be jointly produced and the person with dementia must remain in charge of what happens to them. You should consider co-producing positive statements by celebrating what is still possible, what the person can still do, while ensuring their dignity is central. Attempts at phased changes and taster sessions with different activities or services will allow the person to maintain autonomy with what support feels right for them.
Gathering a person’s history when they are unable to give it themselves is central to supporting the person. To do so you need to gain observations from as many people involved as possible, in order to develop the richest and most robust picture of the person which encompasses a sense of who they are now and not just their perceived care needs. Your professional leadership abilities are key in this and you must be able to determine who the right people and information givers are, while identifying and overcoming any conflicting agendas.
People with dementia can be involved in co-producing wider support and services, not just their own individual support. There are various methods and considerations around this, and ways of making a real impact.
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This open access excerpt from Involving and engaging people with dementia: Practice Tool (2015) was made available by Research in Practice for Adults.
Social workers should be honest with those who have dementia and their families. Be open about what you may or may not be able to achieve within the boundaries of your role.
Do not assume the person cannot communicate or comprehend, even with a mid-stage or late stage dementia. Observe and take note of how dementia is described, seeking and using the person’s own definition.
Avoid using jargon, acronyms, abbreviations, and the day-to-day professional language that social workers sometimes forget might be frightening or confusing for others outside this field. Take into account that the person and their carer may have levels of anxiety and distress when trying to communicate with you. This can mean the person may need more time to understand what is being asked. Try not to leap in with answers – be comfortable with the silence which may be a necessary part of the person getting to the point where they can find the right words to respond to your questions.
You may need to use pictorial aids to communicate. It is important you find ways to help the person communicate even if this may be at a limited level. You need to be mindful of how you describe things. Clarity is key, and means avoiding medical assertions if they are unhelpful.
Consider other factors which impact on the communication such as hearing or sight impairments, also the types and stages of different forms of dementia and how this is likely to be impacting.
Remember that the person with dementia and their carers may sometimes cover up their lost abilities. Remain sensitive to the person’s sense of self-worth and consider, in an appropriate way, sharing something about your own identity (in a professional way) to achieve a sense of transactional balance. Be prepared for default responses when the person is misunderstanding your question. Try closed questions which they may feel better able to answer.
SCIE has useful guidance on having a conversation with someone with dementia.
Written communication also needs to be thoughtful. http://dementiavoices.org.uk/wp-content/uploads/2013/11/DEEP-Guide-Writing-dementia-friendly-information.pdf
Methods that help people with dementia communicate and engage with particular issues include Talking Mats – a low-tech communication tool using pictures and a board which people with dementia can place according to their viewpoints on a broad range of issues.
It’s also important to remember a holistic assessment should include time to watch and observe the person and how they interact with others and their environment. Develop your ability to be a good observer, often a background observer, able to monitor and measure how things change and what constants remain for the person – as for them being able to recognise familiar things are key to maintaining wellbeing.
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The person with dementia, and the person who cares for them, are likely to need someone (a social worker usually, but not always) to co-ordinate teams, support, actions. The NICE guideline on social care for older people with multiple long-term conditions recommends a single, named care coordinator.
This is about you liaising effectively with professionals in other disciplines as well as including the person and their carer/ family at all stages. You need to take into account everyone in the person’s network, so you need to feel confident and knowledgeable around when to delegate tasks out and to whom, be that the person, carer or another agency or service. This is a key social work role.
You need to manage and de-escalate anxieties held by others, both informal and formal members of the network. Your ability to do this lies in your evidence-based practice knowledge, and your decision-making ability.
Don’t underestimate how important your information sharing skills are with the person as well as others. You will need to be mindful of recording, information sharing, confidentiality, consent to share information from the person and the law around data protection. A pro-active multi-disciplinary team will be effective if it is communicating well and working together. The innate cohesion a social worker brings to this group is vital and your professional leadership and professionalism are needed for this.
There are a variety of challenges when working with other disciplines in the person’s network. Your training will have been steeped in the ‘social model’, but you need to understand the nuances of the ‘medical model’ and its history, values, current place in context. You should familiarise yourself with medical language. You need to remain conscious of the power ratios between medical and social care professions, and associated interactions. You will need to be good at using the language other professions listen to – harnessing its power and using your own professional style to obtain the input of others. It is important to work closely with housing as well as health, and with other agencies, especially the voluntary sector (see topic `Work with ongoing change – care and support’).
You might need to identify another professional with whom the person feels safest and connects. Make the most of this connection. Your ability to delegate to, support and coordinate with other colleagues is what might allow the use of this dynamic to monitor and review outside of traditional social work parameters.
If the person with dementia goes into hospital, it may well be your role or a hospital social work colleague’s role to ensure that they have person-centred, appropriate support in hospital, as it can be very difficult to ensure good care for people with dementia in hospitals. https://www.alzheimers.org.uk/download/downloads/id/2907/fix_dementia_care_-_hospitals.pdf
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