Understanding what the person with dementia is going through and how they are feeling about it is the first important part of your work.
Films such as “Still Alice” can provide a helpful starting point for practitioners, alongside other stories and commentaries of people living with dementia:
- http://www.scie.org.uk/dementia/after-diagnosis/support/ (6 people talk about their lives)
- http://www.caroncares.co.uk/caron-cares/saddest-goodbye/ Tony Husband’s cartoon book “Take Care, Son”
This section will focus on:
“Person-centred dementia care is about understanding and responding to the person with dementia as an individual. It involves considering the whole person, taking into account not just their health condition, but also each individual’s life history, unique abilities, interests, preferences and needs. It is about building relationships with people with dementia and their family carers, putting them at the heart of decision making – ensuring the person is an equal partner in their health and care.” (Health Education England, 2015, Dementia Core Skills & Knowledge Framework).
This SCIE video gives an idea of what it might feel like to be living with dementia – the incidents pictured and memories recounted are based upon true experiences gathered from people living with dementia, helping the practitioner to build empathy with those living with dementia.
Acknowledging the impact of the person’s dementia is key. It will be different for everybody, whatever the severity. You need to be able to explain (to the person and, if appropriate, to their carer/ family/ network) what progression of the disease might look like and mean in terms of care. In doing so a key part is creating reassurance and certainty for the person as far as possible. One helpful model suggested by some specialist social workers is using the concept of timelines.
Person centred refers “to a family of approaches aimed at enabling people who use services to plan their own futures and to get the services that they need. While the terminology varies between different user groups, the fundamental values of the concept are the same – embracing the principles of independence, choice, inclusion, equality and empowerment as the foundations of service provision.” (Dowling et al, 2006)
You must be able to create an environment of trust and safety which allows the person to share their concerns without “fear or favour”, which means being mindful, before you start, of the context to any conversation. Being person centred means that you recognise people and their carers come with a range of expectation, perceptions and anxieties. You are able to reduce their anxieties, manage their expectations, and provide reassurance where that is possible, being honest in managing the many uncertainties. It is also about how you discuss and support positive risk-taking, enabling the person to live as freely as possible.
Not only is it important to go at the person’s pace, but a person-centred approach means ensuring the person does not feel rushed. It requires you to make sure you take time to reflect on your practice and consider what is going on for the person, their carers and family, and in their wider social world. It means making sense of what is happening and understanding that at whatever stage the person with dementia is at, be it pre or post diagnosis, they will need time to process what they are experiencing. It means that you are able to recognise and work with a degree of reluctance, resistance or denial from the person or their carers in accepting a situation that is difficult to manage.
SCIE have some useful resources on getting to know the person with dementia: http://www.scie.org.uk/dementia/after-diagnosis/knowing-the-person/.
A holistic assessment should include time to just be with the person, to watch and observe how they interact with others and their environment. Assessment is not just about the person, it is also a continual assessment of their context. Understanding of the individual in situation is not static.
Kitwood’s domains of personhood draw from attachment theory and emphasise the importance of “acknowledging the reality of a person’s emotions and feelings, and giving a response on a feeling level” (Kitwood, 1997:91). Kitwood’s Flower Model of Needs: https://www.searchcarejobs.com/blog/dementia-training-tom-kitwoods-flower-emotional-needs.
Social work with people with dementia involves working alongside that person’s network of friends, family, carers, and local community. You need to co-ordinate appropriately and respectfully, using skills of diplomacy. Help the person to expand their own (pre-existing) support network particularly in the early stages of dementia. This assets and strengths-based approach should be your starting point.
In their presentation ‘Our Song – using music to create meaningful connections when words fail’ (Plymouth University “Beyond Words” conference, 14 March 2017), Ann Gray and Sally Pestell describe how songs can carry a special meaning which might facilitate understanding and feeling understood.
“The past, which is not recoverable in any other way is embedded, as if in amber, in the music and people can regain a sense of identity.” (Oliver Sacks, Musicopilia-Alzheimer’s/The Power of Music)
Dementia support services often use music as a form of communication and to unlock memories. Singing for the Brain groups are an increasing source of support for people living with dementia: http://www.ageuk.org.uk/health-wellbeing/conditions-illnesses/dementia-and-music/
This video of Ted McDermott, who has Alzheimer’s, singing Quando Quando Quando with his son is just one example of how a shopping trip, which can be disorientating and distressing for a person with dementia, becomes fun by connecting through song to something very familiar to the person.
Having trouble with the embedded player? Go directly to the video page: https://www.youtube.com/watch?v=9UQ5mjFzHTA
Understanding identity is an integral part of good practice in working with people with dementia. You can use an ecogram to show the important relationships, resources and systems in a person’s life, not simply those connected with their family.
It may be useful to complete the Alzheimers Society ‘This is me’ tool with the person as it provides a useful focus for setting out their needs, preferences, likes, dislikes and interests. Completing it together can provide an opportunity for exploring their history, personality, current situation, and wishes for the future as well as providing an opportunity for relationship building.
Social workers have also commented that picturing a time continuum with the person can be helpful, linking this approach as far as possible with how someone’s life in the future could connect into their lifestyle, hobbies, interests and preferences. You should be able to walk the person through an understanding of typical progression (if they want to know) over time and link it to their current/ projected health, what might be typical, in association with concepts of loss further ahead (see topic ‘Work with ongoing change’). Being mindful and sensitive over timing and readiness of these sort of conversations is important – you need to judge carefully how ready the person and their carer is around these topics of conversation and when to include using a timeline.
You should be able to explain and interpret the different manifestations of dementia to the person’s loved ones, for example, that the person may start having problems sequencing (following the order of things), so that those supporting can provide the sort of help that enables the person to carry out tasks they can still manage themselves. You might need to educate others (including family and carers), for example in how body language might be perceived by the person and how the behaviour of those around the person, verbal or otherwise, might have an impact for them. You should be able to judge when a social work educative role is required.
A really important consideration here is that understanding someone includes understanding their reality. People with dementia can experience a very different reality. Responses need to be appropriate and can include a spectrum of responses from whole truth telling to shades of lying when someone is unnecessarily distressed by the truth. https://www.mentalhealth.org.uk/sites/default/files/dementia-truth-enquiry-roe.pdf
When working with someone, you should be able to identify the things the person wants to achieve, their goals, desires or aspirations in living with dementia.
There may be a challenge here in terms of how you try to reconcile the desired goals of the person with your perceptions and/ or their carers’ as to what is achievable, which can become more pronounced as the person’s dementia progresses (see topic ‘Involve support networks – Working with carers’). However, this should not preclude working in an outcomes-focussed way.
Working to the person’s desired outcomes and interpreting the person’s behaviour takes time. According to the social workers consulted in producing the Department of Health Manual, whilst adults with dementia can sometimes show behaviour that’s very difficult to interpret, or that may be easy to misinterpret, often someone’s history (employment, life events, pastimes) holds the clues. You need to protect and guard your professional space and time to explore this with the person and their carer.
Working together to build a personal profile or life journal might help . In order to ‘get it right’, and avoid knee-jerk decisions or misplaced actions, you must pay attention to details. Listen to past experiences from the person and their carer/ network. Think how to you can help people move from negative into positive experiences of how social work can enable the person to reach their desired outcomes in living with dementia.