As well as keeping the person at the centre, it is essential to fully engage with those who are important to them across their support network.
Social workers have to be conscious of the differing contexts and agendas at play, and must remain open-minded and non-judgemental whilst applying critical analysis to the information. This does not mean disbelieving others, but you should reflect on the who/ why/ when/ what of all sources of information.
This section will focus on:
Strengths-based approaches help you avoid service-lead scenarios that can creep into practice and discriminate against a person with dementia covertly (see topic ‘Uphold people’s rights’).
The Care Act 2014 requires local authorities to: “consider the person’s own strengths and capabilities, and what support might be available from their wider support network or within the community to help.” http://www.scie.org.uk/care-act-2014/assessment-and-eligibility/strengths-based-approach/keymessages.asp
Through the application of a strengths-based approach, the individual’s independence, resilience, ability to make choices and wellbeing is protected through the promotion of control and ‘everyday’ living.
Through the application of an asset-based approach the skills, strengths and ‘opportunities’ of both a person’s circle of support and local community are given due consideration within the assessment process.
IRISS have created a guide to strengths-based approaches which can be found via the following link: http://www.iriss.org.uk/resources/strengths-based-approaches-working-individuals#content (IRISS is a charitable company which promotes positive outcomes for people who use Scotland’s social services).
In summary, this way of working:
- deploys the strengths of individuals, families, groups and organisations to empower them
- is a collaborative process to identify desired outcomes and
- focuses on the resources in relationships and communities, and treats people as the experts on their own lives.
The needs of the person with dementia and of the carer both need to be considered. The Care Act (2014) changes the legal status of carers, placing them on the same footing as those who are cared for, with the same entitlement to an assessment in their own right. A carer’s assessment must be undertaken when assessing the cared-for person’s needs.
The Carers Trust report on dementia ‘A Road Less Rocky’ (2012) provides a good starting point: “The three critical points – diagnosis, taking on an ‘active’ caring role and the decline of the person with dementia’s capacity – which occur early in the caring journey, will arise for the majority of carers. They are extremely important opportunities for professionals and services to provide carers with initial information, advice and signposting.”
A strengths perspective is essential in valuing the positive aspects of the carer and cared-for person’s relationship, alongside offering support to carers in their own right and remaining responsive to their support needs as these fluctuate and change.
You should help the carer to identify their own strengths in the present and for the future, and be knowledgeable about accessible respite services to provide the carer a break from caring which feels right for them and those they care for. This will require you to support carers and families to reflect on their own needs, to reassure the carer, and assist them to complete contingency plans for if and when they are unexpectedly unable to care.
Basic strategies are important such as what works to keep carers well, what makes them stressed and what should be avoided. Identifying and working to these is reliant on your partnership work with the carer. You should inform carers about their financial and legal rights. You need to help reduce the carer’s anxieties by helping them to become more supported through community links and networks (pre-existing and new), whilst retaining a sense of where your own boundaries lie.
The carer will be coping with transitions of their own as well as for the person they care for. You will need to appreciate the relational dynamic that can change between the person with dementia and their carer. Young people caring for adults with dementia can face particular issues and need particular support. https://www.ncb.org.uk/sites/default/files/field/attachment/young_people_caring_for_adults_with_dementia.pdf
There are a number of sources of helpful advice that you can signpost carers to.
- Carers-Looking After Yourself – audio and text: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=119
- Age UK guide on caring for someone with dementia: http://www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIG47_caring_for_someone_with_dementia_inf.pdf?dtrk=true
- Carers Trust. Alzheimer’s And Dementia: http://www.carers.org/help-directory/alzheimers-and-dementia
- Ideas for carers to set up self-help groups or activities at home: http://www.mentalhealth.org.uk/content/assets/PDF/publications/dementia-self-help-guide.
- A website for carers by carers: www.dementiacarer.net
A systems or ‘whole family’ approach in your work should be considered, helping the individual and their network to identify what assets they have already, and what else they could consider. This is especially recommended if there are multiple (sometimes cross-generational) people with dementia in the household.
‘Family’ can mean very different things to different people. Families, friends, neighbours and networks are complex and fluid. You can use an ecogram to map this.
Listen to past experiences from the person and their carer and family. Think how to involve the person’s family, helping them move from negative into positive experiences of how social work can enable. Observe and reflect upon any family dynamics. Attachment theory can cast light on how people in close relationships interact with one another.
Use ecograms and photographs of familiar people and family members. The person with dementia may not remember names, even of those very close to them and those they see regularly, nor be able to recognise who you are talking about without a photograph to prompt their memory.
You can consider exercises with the network such as ‘gap analysis’ which can help identify what’s needed if missing, what can be achieved in reality, and sources of support/ concern.
An interesting approach is the best friends approach. This involves identifying someone in the network to act as a ‘best friend’, who empathizes with their situation, remains loving and positive, and is dedicated to helping the person feel safe, secure and valued.
Children and young people in the network may need particular consideration around how you talk to them about dementia and its impact. https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_explaining_dementia_to_children_and_young_people.pdf
Some people will have very limited networks and you may need to look at how to build these in the community (see topic `Involve support networks – communities’).
‘Being outside’ and ‘animals’ were voted fifth and sixth out of a list of 37 quality of life indicators by people with more severe dementia (The Alzheimer’s Society, 2010). Access to nature can prolong a sense of independence and promote enhanced mood and improved quality of life for people with dementia. Barriers include cost, awareness, transport and carers’ risk aversion.
An emerging evidence base confirms that pets can provide comfort, stimulation and pleasure for people with dementia. Dementia assistance dogs may help people maintain their routine and sense of responsibility, prompt them and keep them safe, and help them to connect with their communities.
Enabling people with dementia to maintain hobbies and activities not only adds to quality of life but also maintains networks. The Sporting Memories Foundation is a charity that supports older people across the UK living with dementia, depression and loneliness by engaging them in social activities and helping them to recall memories of watching or playing sport.
NDTi and Innovations in Dementia have piloted a ‘Circles of Support’ approach for people living with dementia in four authorities in the south of England. This model involves bringing together a group of people (this can be as small as just two people and might include family, friends and paid staff) to help a person identify what they would like to do or change in their life and then support them to make this happen. Most of the people the project has worked with have wanted to increase their social circles, sometimes through meeting new people or by doing more of the things they used to do and enjoy.
Project participants compiled a practical leaflet for others called ‘Keeping your connections.’ This provides practical tips for people on how to retain or reconnect with existing friends, such as asking for support in specific ways and, importantly, starting to build a circle of support at an early stage of your condition.
The concept of community capacity building introduced by the personalisation agenda focusses on enabling people with care and support needs, their carers and others to identify and make use of local resources.
Working with people’s own communities maintains and builds on the familiar, which is crucial to working with people living with dementia. Social workers can assist by sign posting and identifying others who can support them in this.
You do need to keep up to speed with the resources in your locality as much as possible, which will include local dementia friendly cafés, shops and other local dementia friendly resources. You should understand any necessary referral systems and be able to signpost at the right time. You need to know when to introduce a specialist service as well as have knowledge of community resources not in the domain of social work.
Walking the patch with someone with dementia is one way of discovering how people with dementia experience their local environment – finding their way, using a service, processing local information. People with more advanced dementia have been well supported to be involved in ‘walking the patch’ situations, and this has been especially relevant to work around dementia-friendly communities.
The growing dementia-friendly communities movement is aimed at creating communities where people with dementia feel confident to participate.