At all stages of working with someone with dementia, you will need to be prepared to work flexibly and proactively. This theme is based around the principal that you should work with ongoing change. It looks at the stages of dementia and how you can intervene to support people well from diagnosis to end of life.
This section covers:
As the Care Act guidance states, one of the social work tasks is about how you support people in preventing deterioration in their physical, psychological and social health and how you enable individuals to thrive and have the best quality of life for the longest possible length of time.
This requires you to work proactively, thinking and planning ahead. Important questions to ask are:
- What is important to you now and in the future?
- What do you think will happen?
Your focus should be on identifying what, if any, resources are appropriate to support the individual and their carer rather than formal care. You should consider the least invasive solutions and encourage the person to identify what feels best for them. Bear in mind, social work involvement needs to be timely, and come at a point where the person feels able to engage or when their carer expresses a need for help in their own right to carry on caring.
When working with someone, you also need to plan how you will end your involvement. What is going to be appropriate for this person, does it need to be phased? You need to be clear on why you are finishing your work, what happens next, who they can contact about what, and they should be advised about how and when to re-contact your service in the future.
There is well documented evidence that dementia has a recognised pathway of progression. The needs of a person with dementia, and their family and carers will be different at different stages of the condition.
The NES framework for dementia describes different stages as:
- Keeping well, prevention, and finding out it’s dementia.
- Living well
- Living well with increasing help and support
- End of life and dying well
In the chronology of a person’s dementia, the phrases ‘early onset’ or ‘young onset’ are usually used for adults in what is the traditionally recognised ‘working age’ period of their life (up to around 65 years of age), in keeping with historical retirement rules. It’s important to be able to differentiate between the stages and levels of dementia with the person, and apply your different levels of knowledge in your practice accordingly. Be clear on terminology – there are differing views and uses, and ‘early onset’ can mean a number of things with regard to dementia and its severity.
In particular, you need to have a good grounding in being able to spot the early signs of dementia. The SCIE dementia Gateway provides a useful set of resources on this.
You may be the first person to have contact with the person and it is therefore important that you are able to provide the reassurance and information for someone early on. Bear in mind that some individuals will be keen to gain a diagnosis, but not all will. Similarly, as a person’s dementia is progressing, regular reviews of need will be required. A useful source for understanding the stages of dementia is the Alzheimers Society web page: https://www.alzheimers.org.uk/download/downloads/id/1772/factsheet_the_progression_of_alzheimers_disease_and_other_dementias.pdf.
You need to feel confident about when to bring a dementia specialist into the picture. The word ‘referral’ or ‘refer’ can frighten, confuse and exclude those with dementia and their carers. Be confident to explain when you have a role to assist and when you feel someone with different or more specialist skills might be a more suitable co-ordinator, for example, a dementia navigator, Admiral Nurse, third sector support worker or a GP. You need to know what resources are available in your area with this regard.
The NES (2009) guide notes that “A person with dementia frequently enters into a long ‘flat’ period after diagnosis because of the belief that little will – or can – be done for them in these early stages. In fact, the potential for help through early intervention is high. Early intervention – including providing good information, support and care – is designed to help a person with dementia deal with the challenges of their diagnosis and to aspire to a meaningful and positive life. There is a clear and prolonged window of opportunity for health and social care professionals, third sector and other support services to play an important role in making early intervention a reality.” (NES (2009) An Educational Resource to Support Early Interventions for People Receiving a Diagnosis of Dementia)
You could be involved with the person at a point where they are requiring assessment either before or close to them receiving a diagnosis. The earlier the better, so as to complete some investment in the early stages of their health changing.
It is important to understand what the impact of diagnosis might be by learning from people with lived experience:
Here is a video of a person talking about the impact of diagnosis.
Having trouble with the embedded player? Go directly to the video page: https://www.youtube.com/watch?v=Kzk4WG_5oQA
You will need to work with the person to help them to a point where they have a level of acceptance around their condition or diagnosis. Encouraging them to see their GP could be part of this. There may be a tension here in a natural resistance to or denial of the condition and difficulties, and have a right to do so.
Signposting and advising are crucial when supporting a person with dementia. There are multiple services, support networks and avenues of assistance for people in the early stages of dementia, but they are not always easy to navigate. The guide by NHS Choices on activities to stay well may be helpful for the person.
Your role is in assisting the person to be making an active choice and plan as to how to remain independent and autonomous in the early stages of dementia. One aspect that many with dementia may require help with early on, is the setting up plans to do with legal representation and finances.
When identifying the right early support through person-centred working, you may be identifying resource gaps with the person. You should consider bringing any such deficit to the attention of the commissioning arm of your organisation. You could encourage the person and their carer to consider possible resources in their own familiar communities and networks.
There are useful guides about support after diagnosis:
- Living well after diagnosis: https://www.alzheimers.org.uk/download/downloads/id/1881/the_dementia_guide.pdf
- Support after diagnosis: http://www.scie.org.uk/dementia/after-diagnosis/
- Post diagnosis guide for early/ young onset dementia: https://www.youngdementiauk.org/sites/default/files/A%20guide%20for%20managing%20a%20new%20FTD%20diagnosis.pdf
- The NES guide (pg 6-16) sets out a range of early interventions to support people receiving a diagnosis of dementia: http://www.nes.scot.nhs.uk/media/351619/early_interventions_dementia_education_resource.pdf
One of the ways in which people can be supported is through peer support from others who have experienced a diagnosis; here is an example: https://www.nefconsulting.com/wp-content/uploads/2015/10/Social-Return-on-Investment-Study-Dementia-Peer-Support-Groups.pdf.
The idea that it is possible to ‘live well’ with dementia is really quite radical. There is a popular assumption that the condition will lead to a total shutdown of the self, with increased dependency on services and inevitable institutionalisation. Being safe and comfortable is the best we can hope for. We have witnessed a significant backlash against this portrayal of the condition in recent years – often led by those who have themselves been diagnosed with it.
Enablement is about promoting independence and improving wellbeing – principles which lie at the heart of the Care Act 2014. If we apply a social model of disability to dementia (in contrast to the medical model which tends to prevail), enabling someone is the opposite of disabling them, it is about reducing the barriers that get in the way of them doing the things they want to do and being the person they are.
The Care Act (2014) emphasises prevention, reducing needs, identifying unmet needs and carers’ needs, ensuring integration of care and support provision where this promotes well-being for those with needs or where this contributes to prevention.
You should work through conversation with the person about how their daily functioning has changed at home and elsewhere. What ideas they have about delaying this deterioration and how they might maintain their current lifestyle and identity as far as possible.
Maintaining independence is one of the crucial determinants of well-being for people with dementia. As well as ‘activities of daily living’ such as washing and dressing this includes engagement in social activities and hobbies. Some people will still be at work or will have children and others that they look after. Useful information can be found here: https://www.youngdementiauk.org/living-young-onset-dementia.
Some areas to think about from evidence are:
- Supporting people to exercise and eat well: http://www.scie.org.uk/dementia/living-with-dementia/
- Housing and what home means for people with dementia: http://www.housinglin.org.uk/_library/Resources/Housing/OtherOrganisation/Beyond_the_Front_Door_Exec_summary_Final_07022017.pdf
- Reablement for people with dementia to preserve and encourage a ‘more functional state’, reduce social isolation and support carers: http://www.scie.org.uk/topic/careservices/preventionreablement/reablement
- Transferrable ideas drawing from Positive Behaviour Support strategies – guidance and examples from practice when working with people with learning disability and autism described in this booklet by United Response may be useful: https://www.unitedresponse.org.uk/Handlers/Download.ashx?IDMF=5212082f-e5ac-4aef-9f15-a42e913370e6
- Assistive technology: http://journals.sagepub.com/doi/full/10.1177/1471301214532643
- And ICT: http://www.scie.org.uk/dementia/supporting-people-with-dementia/ for example –
- Digital support: https://www.goodthingsfoundation.org/research-publications/dementia-and-digital
- Virtual companions: http://www.aal-europe.eu/projects/confidence/
- Using computer games: https://www1.bournemouth.ac.uk/sites/default/files/asset/document/a-how-to-guide-using-gaming-technology_0.pdf
- Using I-pads: http://www.anchor.org.uk/sites/default/files/news_articles/documents/How-iPads-can-support-people-with-dementia-living-in-care-homes-FULL-report-2015.pdf
- Music: https://whatworkswellbeing.files.wordpress.com/2016/11/wellbeing-singing-music-diagnosed-conditions-dec2016.pdf
Your skills and abilities to be able to navigate a way through for the person and their carer are key, identifying the appropriate pathways and specialists (if the latter are required) for people to contact according to their individual needs and preferences. This aspect of social work relies on your ability to decipher referral systems, health and care terminology, and then translate the processes and meaning of all these back to the person (and their family, where appropriate).
However, as a social worker, you might want to consider the sensitive task of explaining national eligibility criteria of the Care Act 2014 and what this means, including possible financial assistance towards help in the future as their condition advances.
You should try to help the person move beyond acceptance so they are in a place of control and able to forward-plan before their dementia is advanced to the point where they are no longer able to make informed decisions about their own care needs. This could include assisting them to plan a will, linking them in to research groups, supporting them to participate in service development, helping them write advance decisions around their care, or a do not resuscitate agreement. This might alleviate the commonly experienced sense of being ‘a burden’ by many with dementia.
If you live in an area where it has been developed, you may find the Dementia Roadmap helpful which has been developed by the Royal College of GP’s. It is a web based platform that provides high quality information about the dementia journey alongside local information about services, support groups and care pathways to assist primary care staff to more effectively support people with dementia, their families and carers.
It will be essential to work as a triangle – practitioners, the person with dementia and carers (see topic ‘Involve support networks – Working with carers’). It is also important to work with housing and other services, including the voluntary sector.
Services for people with dementia need to be dementia-friendly and sensitive to particular needs. There are various resources and pieces of research that identify good practice in:
- Using personal budgets: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_personal_budgets.pdf
- Home care: https://www.alzheimers.org.uk/download/downloads/id/3234/fix_dementia_care_homecare_report.pdf
- Respite: http://onlinelibrary.wiley.com/doi/10.1111/hsc.12095/full
- Care homes: http://www.housinglin.org.uk/_library/Resources/Housing/Practice_examples/Housing_LIN_case_studies/HLIN_CaseStudy_123_EoLC.pdf and http://journals.sagepub.com/doi/full/10.1177/1471301214532460
When health is failing a key social work role is in enabling a person to consider important and sensitive questions about how they would like to be cared for, and ultimately what plans they want to make at the end of their life.
As well as a good knowledge of mental capacity, you need to be familiar with:
- Lasting Power of Attorney
- Advance Statement of Wishes
- Advance Decisions http://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx
- Advanced Care Planning http://www.dyingmatters.org/page/planning-your-future-care
Identifying end of life and talking about it can both be very difficult. Earlier conversations are helpful, however people can still express preferences in later stages of dementia and the Mental Capacity Act must be followed. You will need to be up-to-date on the current thinking on fluctuating capacity and case precedents in this respect.
It is important to understand some of the implications of later stages of dementia https://www.alzheimers.org.uk/download/downloads/id/1762/factsheet_the_later_stages_of_dementia.pdf
and what end of life care in dementia means. http://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/