Physiotherapists as Advocates for Individuals Living With Dementia

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Introduction

Dementia is a global health priority, affecting populations worldwide (WHO 2015). Health care issues, including dementia, are taking center stage in both political and media discussions, and health professionals, including physiotherapists, must be ready to participate in these discussions with confidence and influence. The Scottish Government’s Proposal for Scotland’s National Dementia Strategy 2016-19, states the need for continued support to improve all areas of dementia care, at all stages of the condition. It is crucial that individuals with dementia receive the care and services they require and are not disempowered or discriminated against due to their condition. The Proposal for Scotland’s National Dementia Strategy 2016-19 also prioritizes “enhancing a multi-disciplinary approach to care at home, including the promotion of the therapeutic and enabling role of AHPs for people with dementia” (pg. 7). By taking on the role of advocate and tackling key issues related to dementia and dementia care, physiotherapists can ensure the rights of every individual are being upheld, that each person is receiving the best possible care, and that no individual living with dementia is victimized or discriminated against.
In Scotland there are almost no courses on developing the skills needed for advocacy, with the few available being continuing education diplomas and certificates in Independent and Mental Capacity Advocacy (City and Guilds). Advocacy is not directly included in professional qualification courses and there are few books available on the subject, further indicating the need for this wiki.

Target Audience

This is a learning resource for practicing physiotherapists and physiotherapy students to give them the tools necessary to act as advocates for individuals living with dementia.

Learning Outcomes

By the end of this wiki, you should:

1. Critically identify the need for advocacy on behalf of people living with dementia.
   
2. Critically discuss the potential attitudes and perceptions of health-care professionals and the general population towards individuals living with dementia.
   
3. Be able to critically evaluate the role of physiotherapist as advocate for individuals living with dementia.
   
4. Be able to reflect on personal experiences of providing physiotherapy to vulnerable populations and identify opportunities for advocacy.
   

Advocacy

What is Advocacy?

Advocacy involves speaking out on behalf of another individual or group of individuals in a way that represents their best interests. The New Penguin English Dictionary defines advocacy as “active support or pleading”. From this definition it can be implied that advocacy entails supporting someone by actively acquiring resources for them or on their behalf. There are many different forms advocacy can take, such as self-advocacy, legal advocacy and independent advocacy, and anyone who possesses the necessary skills can act as an advocate. In health care, advocates act according to the patient’s values and wishes and advocacy can be seen as part of the therapeutic relationship between the patient and health care professional (Campagna, 2013). It involves informing the patient of their rights, ensuring they have the required information to make informed decisions, supporting the patient in their decision, and protecting their interests and rights (Bateman, 2000). Advocacy is also about influencing decision-making, and health care professionals use this skill everyday. Whether it is persuading a patient to stop smoking, convincing colleagues to improve patient care or ensuring a patient has access to the services they require, advocacy is taking place.

Why is Advocacy Important & Who Requires One?

Advocacy arises as a result of working with people who are disadvantaged in some way. Individuals working with groups who are marginalized in society, such as the elderly, ethnic minorities, or individuals with disabilities, must be prepared to act as advocates on their behalf. Since advocacy involves aiding and supporting individuals or groups, it fits into the range of fundamental activities performed by health-care professionals. Advocacy can provide an element of informed and compassionate health care planning and delivery that is available from no other source (Bateman, 2000). Every individual has equal rights to access the services they require, but particular populations or individuals may be unable to protect their own rights or access services. It is vital that individuals who are disempowered in some way are not subject to inadvertent discrimination or decreased access to services because of their circumstances. Advocacy is a mechanism through which individuals’ rights are enabled and protected.

Advocacy may include supporting an individual to: (Centacare!!!)

• The right to confidentiality and privacy
  
• The right to dignity and respect
  
• The right to quality services
  
• The right to choice and control
  
• The right to information to inform decision making
  
• The right to non-discriminatory service
  
• The right to make complaints
  
• The right to protection of legal and human rights, and freedom from abuse and neglect
  

Individuals require advocates for various reasons. As discussed above, advocacy comes from working with people who are disadvantaged in some way. These disadvantaged populations are vulnerable and often marginalized in society. They may be momentarily vulnerable, weakened by illness or injury; or distressed by a loved one’s suffering, disability, or death. Often these populations may have difficulty self-advocating and may struggle to protect their own rights. They may include ethnic minorities, people with disabilities, the elderly, and individuals living with dementia.

What Skills or Attributes are Required to be an Advocate in Health Care?

There are no uniformly accepted educational requirements to be an advocate in health care (Campagna, 2013), but Kelland and colleagues (2014) interviewed 17 self proclaimed leading advocates in the field of physiotherapy and have proposed eight attributes a physiotherapist must display competence in, in order to be successful in the role of advocate. Others have noted similar characteristics required for a health professional to be successful advocates (Bateman; Campagna). The attributes are listed below:

1. Collaboration

Physiotherapists must collaborate with multiple people in various ways. It is important to understand the roles of other health professionals in order to collaborate and best meet the needs of the patient. Physiotherapists must also collaborate with their patients and their families to ensure effective patient-centred care.

2. Communication

It is important to know one’s audience and to adapt one’s communication style accordingly. Physiotherapists must be good listeners and be able to speak out when necessary. Listening is critical to understanding the needs of others and is a valuable first step to empowering patients to advocate for themselves.

3. Scholarly practice

In order to be a successful advocate, one must understand whom they are advocating for, their mission, and what their needs are. By researching and demonstrating that there is a need for advocacy in a particular area, more will be achieved. It is important to have sufficient and accurate data and research before speaking out.

4. Management

To be a successful advocate, physiotherapists must understand aspects of management and how these factors might affect one’s ability to advocate for patients. For example, it is important to understand financial, funding, and service delivery model factors that impact a physiotherapist’s ability to advocate for patients.

5. Professionalism

It is important to engage in professionalism and take on roles beyond those of a clinician. This includes showing a commitment to improving the overall health care patients receive, not necessarily only to physiotherapy.

6. Passion

When one is passionate about the issue at hand, advocacy will be easier. However, it is important to balance and keep emotions in control; there is a place for passion, not for anger.

7. Perseverance

Advocacy is often a long-term venture and thus perseverance is an important quality to possess.

8. Humility

Physiotherapists must be able to reflect on whose agenda they are advocating and commit to advocating for that agenda, even if it is not their own. It is essential to understand the needs and priorities of other people.

Five of these attributes, collaboration, communication, scholarly practice, management and professionalism, overlap with current standards for practice for physiotherapy defined by the Health and Care Professions Council and the Chartered Society for Physiotherapists (CSP), and represent acquired skills. The other three, passion, perseverance, and humility are additional and individual to the role of advocate. Therefore, this indicates that all physiotherapists within the UK currently possess over half of the attributes for successful advocacy and thus are well equipped to take on this role. For physiotherapists to be successful as advocates, they must have to ability to integrate and adapt the above 8 attributes in practice. The CSP’s Physiotherapy Framework lists “advocacy” as an expected value of all CSP members, while the HCPC Standard of conduct, performance and ethics state that health care professionals must “promote and protect the interests of service users and carers”. While this does not specifically include advocacy as a role, the words protect the interests of fall into the earlier mentioned definition of advocacy. By understanding the role of advocate and what attributes are needed for successful advocacy, physiotherapists of all levels of experience can be advocates and ensure patients have their rights protected and are receiving the best care. Therefore, this makes physiotherapists suitable and capable advocates for individuals living with dementia.

Advocate’s Attitudes and Beliefs

The three above mentioned attributes to successful advocacy, passion, perseverance, and humility, represent personality characteristics and can be interconnected with an advocates attitudes and beliefs. Advocates must have clear, focused and structured ethical beliefs and values so that their efforts are concentrated on the advocacy task, and not distracted, when ethical problems arise. The HCPC Standards of conduct, performance and ethics outline structured ethical codes for health professionals in the UK to follow and adhere to for practice. The HCPC Standard of proficiency further assists to clarify the physiotherapists’ ethical obligations and minimize ethical dilemmas. For example, HCPC Standard of proficiency 2.1 states physiotherapists must “act in the best interests of service users at all times”. In the role of advocacy, this means that advocates should always remember whom they are acting for and what the goal of their action is. HCPC Standard of proficiency 7 states that physiotherapists should “be able to understand the importance of and be able to maintain confidentiality”; patients must feel safe knowing that what they say is confidential and confidentiality essential to building an honest relationship between advocate and patient. Advocacy has historically been separate from service providers and other services. This independence safeguards from the possibility of conflict of interest arising from any of the services accessed by the individual requiring advocacy (Scottish Independent Advocacy Alliance). It is crucial that when assuming the role of advocate, physiotherapists remain free from conflict of interest so that the individual is in control and has a sense of ownership over the situation. In addition, the advocate must be honest and straightforward with the patient regarding his or her own values and beliefs. At times, the individual’s wishes and instructions may conflict with the values and beliefs of the advocate. The advocate must be able reconcile their own ethics and values with their duty to the patient. If they cannot, then the advocate must reconsider whether they are ready to be an advocate at all. The HCPC Standards of conduct, performance and ethics 9.4 states that health care professionals “must declare issues that might create conflicts of interest and make sure that they do not influence [their] judgment”. Health care professionals, including physiotherapists, have the same values, beliefs and ethics as needed for successful advocacy, thus further making them well suited for the role.

Dementia

Before beginning this section, take a few minutes to jot down some of the words or phrases that come to mind when you think of Dementia.

Prevalence

There are an estimated 850,000 people living with dementia in the UK today (Alzheimer’s Society, 2014). This is expected to increase to one million people by 2025 and then double to two million by 2050 (Lewis et al, 2014). This predicted increase is a worldwide problem with the global number of people living with dementia predicted to increase from the current 46.8million to 130million by 2050 (Prince et al, 2015).

From the 850,000 people affected in the UK, 62% are female (Lewis et al, 2014). Although dementia is a disease associated with the elderly population, 45,000 of the total number of people living with dementia are under 65 years old (Lewis et al, 2014). Although around 95% of people living with dementia will be older, it is important to recognise that it can affect younger patients and that there may be extra challenges that come along with that. Werner et al (2009) stated that persons diagnosed with dementia who are under 65 years have increased emotional and psychological difficulty compared to those over 65 due to a role reversal, in that children will now be the caregiver for parents earlier than expected and the loss of employment causing a reduction in self-efficacy and worth.

These statistics shows that Dementia is a worldwide health issue, which unfortunately is on the increase. As physiotherapists, we are likely to encounter patients living with dementia in many different environments and with the estimated population of diagnosed individuals set to increase, working with these patients and their carers could be a bigger part of our role.

Types of Dementia

Dementia is an umbrella term for a loss of cognitive function caused by damage to the brain. Dementia UK (2015) suggest there are four main types of Dementia (ranked most to least common):




Each of the different types of Dementia have different presentations and the patient may experience different symptoms.

Alzheimer’s disease

The most common type of dementia is a gradual progressive disease that affects 60% of dementia diagnosed patients and predominately those over 65. The damage is due to proteins (amyloid and tau) malfunctioning in the brain which causes brain cells to die. It may also be due to a reduction in the neurotransmitter acetylcholine leading to information not transmitting.

Alzheimer’s disease affects five areas of the brain – memory, insight, cognitive ability, spatial awareness and language. Symptoms may include: poor memory resulting in losing items and repeating oneself; poor organisational skills, inability to make decisions and increasing difficulty with conversations; misuse of words; increased confusion and easily disorientated.

Vascular Dementia

This type of dementia is caused by transient ischemic attacks (TIAs) in the brain resulting in areas of brain damage. In this type of dementia the progression is usually more step-like with periods of remission where the person stays at the same level for a period of time. Language and communication are likely to be most affected in this type of dementia but some people are diagnosed with ‘mixed dementia’ which is a combination of vascular dementia and Alzheimer’s disease – this would mean there would also be significant deficits in memory.

Frontotemporal Dementia

Most commonly diagnosed in those under 65 years, this part of dementia affects predominantly behaviour and personality due to the frontotemporal lobe being mostly affected. It is gradual and progressive and the main symptoms include loss of inhibition and inappropriate behaviour.

Dementia with Lewy Bodies

Changing cognitive impairment and movement are commonly affected in Dementia with Lewy Bodies. It can have a similar presentation to Parkinson’s disease with people having tremors and shuffling gait patterns. Hallucinations are another symptom along with difficulty sleeping and swallowing.


The four types of common Dementia discussed will all eventually worsen due to increasing damage to the brain. This results in people needing more and more care due to decreased independence.

Recent Related Research (from <a href="http://www.ncbi.nlm.nih.gov/pubmed/">Pubmed</a>)

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References

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