Your professional values alongside the legal duties placed on you, require you to work in ways which uphold the person’s rights and challenge attitudinal or systems barriers to their voices being heard and their needs being supported.
This section will focus on:
You need to be conversant with the Human Rights Act 1998 and able to explain the person’s rights using this legislation. This short video from the British Institute of Human Rights may be helpful in this respect.
The British Institute of Human Rights also provide a resource booklet ‘Dementia and Human Rights: A practitioner’s guide’ which is available to download from their website. The website also has a useful booklet “The Difference it Makes: Putting human rights at the heart of health and social care” which is available to download here.
While challenging on the person’s behalf, bear in mind that what you are doing is adhering to the Care Act (2014)’s central philosophy of keeping the person at the centre of your practice. Retaining the person’s views is paramount. You need to work towards assurance from others to respect the individual’s integrity while sharing and discussing information about them subject to legal and professional boundaries. There is a fine balance to be achieved when it comes to sharing information in a person-centred way across a multi-disciplinary team. You need to be willing to share what is necessary, as do your colleagues, in a manner that is proportionate.
You need to challenge shifting referral systems and insist the person comes before any service-led practice from elsewhere, whilst maintaining a constructive, diplomatic stance throughout. Some of the challenging expected of you will be about service standards, and you need to be able to produce an evidence-based argument regarding such scenarios which remains factual and practical, and which does not compromise future necessary professional relationships.
Attitudes to dementia in society are not necessarily evidence-informed. http://www.bsa.natcen.ac.uk/media/39130/bsa-33-attitudes-to-dementia.pdf
There are many people with dementia who are still active and involved in their communities, but who are perceived as being unable to speak for themselves. Others, particularly in the later stages of dementia, may be regarded as being without mental capacity rather than efforts being made to establish choices within their capability, this being ‘moment specific’.
For example, a woman in the later stages of Alzheimer’s Disease, may need full nursing care and help to wash and dress each day. She may no longer recognise family members nor the long term carers in her care home. She may still though be able to say which outfit or colour she prefers if given the choice between two each day. Her mental capacity to make this choice remains intact.
The Age Concern Advocacy Project (2009) report “Someone to Speak up for Me” highlighted this well:
Older people who lack mental capacity for some decisions have little or no voice and are among the most excluded groups in society today.
‘Lacking mental capacity’ is a label that many people cannot see beyond, but in spite of it many older people are able to express their views, wishes and choices, given the opportunity and the right support.
Anxiety and aggression and other ‘challenging behaviours’ in older people are often wrongly ascribed to a mental illness rather than to potentially treatable causes such as infection control and pain management.
Problems and crises in the lives of older people do not fall into neat, service-defined pigeonholes. A holistic approach is needed that rebuilds the often lost community connections with the older person.
Addressing the stigma attached to someone’s inability to self-advocate is central to representing them in a way that is ethical and person-centred. Social workers must retain their strengths-based working methods in this and ensure periods of reflection upon their own practice to stay mindful of why they are doing what they are doing and how they are doing it .
Social workers need to challenge poor decisions or discriminatory practice that affects a person with dementia negatively. You should feel confident in your ability to manage conflict constructively and come to a satisfactory resolution with carers, friends, family or other professionals. Be confident in your knowledge of the principles contained within the Human Rights Act (1998) and the Equality Act (2010).
This blog highlights the importance of ‘seeing me’ in dementia.
The RiPfA website to support social work practice with people with care and support needs in situations of coercion and control (www.coercivecontrol.ripfa.org.uk) summarises intersectionality theory, signposting to resources to further explore how identity is fluid and multi-faceted:
“Intersectionality refers to how different aspects of identity are interconnected. Theories of intersectionality explain how identity and consequential experiences of discrimination cannot be examined separately from one another, nor by a simple ‘adding up’ of different aspects of oppression. Rather, multiple dimensions combine to intensify (or reduce) systematic and institutional oppression” http://coercivecontrol.ripfa.org.uk/case-studies/case-study-1-ayesha/
For example, adults with dementia and a learning disability will have, or be facing, additional layers of stigma and discrimination which may already be lifelong. Social workers need to invest professional time to research how best groups at risk of multiple oppressions can be represented in a meaningful, person-centred way.
Some considerations around dementia for different groups are set out in Skills for Care’s guide.
Some areas to consider are:
- Sensory loss http://www.scie.org.uk/dementia/living-with-dementia/sensory-loss/
- Black and Minority Ethnic experiences https://www.alzheimers.org.uk/download/downloads/id/1857/appg_2013_bame_report.pdf
- Learning disability https://www.alzheimers.org.uk/download/downloads/id/1763/factsheet_learning_disabilities_and_dementia.pdf
- LGBT http://dementiavoices.org.uk/wp-content/uploads/2015/03/Over-the-Rainbow-LGBTDementia-Report.pdf
Often, carers have not ever considered themselves as being ‘a carer’ in the formal sense. Occasionally, some are uncomfortable with this label or actively dismiss it. Carers have reported feeling as though they lose their own identity behind their carer role. Some have said this feels like being a shadow. It is vital you provide carers the chance to discuss their emotions about where they want their life to go, what their hopes are and how they might achieve them.
When representing a person with dementia under the Mental Capacity Act (MCA) 2005, your self-confidence to use your authority in a legal, person-centred, sensitive manner will be imperative. The DH (2005) Curriculum Guide on Social Work with the Mental Capacity Act explains the MCA assessment in more detail: how it works, what it is for, why it is required, talking through your findings and reassuring others what the next steps are.
You must be able to discuss the least restrictive options with the person (and others involved). Through this process, you are expected to educate others in this area of the law, explicitly or implicitly. Conducting forums in which to make Best Interests decisions will be where your capability and legal literacy will be key.
It won’t always be you who needs to be the person’s representative. It is as important you know when to represent as when not to. Knowing the law regarding advocacy as dictated by the Care Act (2014), through to understanding the necessary criteria attached to involving an Independent Mental Capacity Advocate (IMCA) should be at the centre of your advocacy.
The Alzheimer’s Society provide a useful summary of the sections of the Mental Health Act 1983 which are likely to be the most relevant to people with dementia and their carers. They explain the role of an approved mental health professional (AMHP) under section 2 of this Act: https://www.alzheimers.org.uk/info/20032/legal_and_financial/128/the_mental_health_act_and_guardianship/2
Any decision you make should be in the person’s best interests and be proportionate to the needs and possible risks being assessed. A partnership-approach lends itself to this way of working whilst being confident in your knowledge of ethical guidance on confidentiality and information sharing.
Social work practice with adults who have dementia must be evidence based and defendable, not decision making based on defensive practice. This relies upon the decisions you take being shared and owned (when necessary) with others. Be clear about what and who you are accountable to and be able demonstrate what informed your decision making.
It is important the person’s wishes and choices made both before and since their diagnosis are considered. Has their behaviour changed and what was learnt previously with regard to best outcomes for the person? When working via the person’s main informal carer, you should use their information towards robust planning, assessing and managing. You will need to consider how you use the views of colleagues to assist in your information analysis. This provides more reliable evidence beyond any linear views shared which may give cause for concern, for example, if a carer is withholding information for some reason.
On occasion a carer may be struggling to explain their loved-one’s views/ needs. With more complex aspects, a third party view cements your practice in an accountable way. You need to feel confident to approach a colleague when unpicking information. You might need to reflect with other professionals on the validity of information shared, while focussing on the wider context.
Part of representing a person with dementia well is ensuring that their thoughts and views are heard if they cannot express them themselves. You either need to feel confident enough to do this or be able to delegate to another to do so, giving the advocate the appropriate level of information required. The Care Act (2014) has introduced a new duty to ensure that where an adult may be unable to fully participate in any assessment or review of their own needs, that they are offered access to an advocate in such circumstances.
Navigating through the systems, referral pathways, and services for people with dementia will be a key aspect of your advocacy for the person. You will have to be able to de-code professional terminology on their behalf and relay the meaning of it, as much as possible, back to the person and/or their carer.
You should draw on your knowledge of local resources including medical models of help. You need to understand the financial implications of any decisions you have to make on the person’s behalf. Ensure you understand and are conversant with national and localised procedures and policies and that you also understand what is available from secondary providers and the voluntary sector.
People with dementia, and their carers, are at risk of not being able to fully understand the complexities of the assessment or review process – you may need to explain their right to an advocate. Explanations will need to be delivered in a jargon-free way and you will need to ensure that the person has access to the right support at the right time for them. Some examples of the difference that advocacy can make can be found here: http://ellerman.org.uk/documents/policies/3_Dementia_Advocacy_Network_TAKING_THEIR_SIDE_MARCH_2012.pdf.
A risk enablement approach aims to assess risk in the broadest possible sense – looking at the psychological risk of not doing something, as well as the physical risk of doing it. This approach is tailored to the person and recognises their strengths and abilities. When supporting people with dementia to take positive risks it is crucial that we understand and act within the law.
You may have to challenge the person themselves and or their carer/ family or indeed other professionals if, for example, the person’s inability to make capacitated decisions as assessed by you leaves them (or a third party) at high risk of significant harm. If you are taking Best Interest decisions via the Mental Capacity Act (2005) assessment (DH, 2005) you must ensure that decisions are proportionate and are the least restrictive option for the person. http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpgacop_20050009_en.pdf
A person with (advanced) dementia may be at more risk of requiring help within a safeguarding scenario especially when, for example, they may be declining support which assists them to remain safe. In this situation, more than ever, your advocacy on their behalf must be evidence-based, with their best interests at the centre of your work. You should be familiar with your statutory safeguarding duties under the Care Act (2014) and guidance on Making Safeguarding Personal, in conjunction with your organisation’s own internal procedures that run alongside.
Your inter-professional work will probably involve a thorough and robust risk assessment carried out by you in conjunction with at least one other professional. You will need to be able to reassure others and support them to avoid considering “knee-jerk” decisions on behalf of people with dementia for example, not thinking the person with dementia can have a sex life, drink alcohol, as they always might have done through life.
Your professional leadership skills will be called upon so that you can put into practice your authority in a proportionate and measured manner. A degree of negotiation is required of you as you will need to overcome varying elements of resistance. You may need to remind non-social worker colleagues that adults with dementia still have agency, determination, and a need for control in their lives and care planning decisions. You may need to manage the anxieties of other professionals when collective decisions on behalf of the adult with dementia need to be taken. You will need to ensure the adult’s rights to privacy, autonomy and power are wholeheartedly considered in any discussion/ decision making.
Positive risk taking can take place within communities. http://www.jrf.org.uk/sites/default/files/jrf/migrated/files/Positive-risk-taking-dementia-summary.pdf.