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How Does Dementia Affect Decision Making

Types And Symptoms Of Cognitive Changes

Making dementia caregiving decisions and dealing with other people’s opinions

Discuss all of these possible causes of cognitive problems with your health care team. This will help you receive the correct diagnosis and treatment.

Mild cognitive changes

Sometimes survivors experience changes in their ability to remember or concentrate after they have chemotherapy. This typically mild form of cognitive change is sometimes called “chemo-brain.” Even these typically mild cognitive changes can disrupt daily living and the ability work. Symptoms include:

  • Difficulty concentrating and multi-tasking.
  • Inability to think clearly.

Neurocognitive effect of tumors

A tumor or cancer cells in the brain can injure healthy cells and can cause cognitive changes. Chemotherapy, radiation and surgery are treatments that are used to remove or destroy cancer cells. However, they can also damage some of the surrounding healthy cells either by direct administration or by impacting the brain indirectly. Depending on how much damage occurs, there could be noticeable symptoms such as with thinking, memory, speech, visual-spatial problems and behavior changes.

Acute onset cognitive changes

Acute onset cognitive changes are those that occur suddenly. Some acute changes, such as delirium, come and go with no real pattern. This can happen during treatment with certain medications and chemotherapy agents, and may be reversible. Symptoms include:

  • Fluctuating alertness and orientation.

Other cognitive changes in cancer survivors

  • Anxiety.
  • Severe nutrition problems.

What Does Meaningful Engagement Mean

People living with dementia tell us, “Nothing about us, without us.”

They also tell us that their experience working with organizations â regardless of where they live in Canada â is sometimes “uneven,” meaning that they are not always included in ways they believe would be beneficial for the organization or that are satisfying for them.

It’s one of the Alzheimer Society’s guiding principles to recognize the individuality of each person with their own unique life experiences, personality, values, beliefs and opinions â this includes people living with dementia.

Meaningful engagement includes:

  • Following a person-centred approach that considers the person living with dementia first
  • Respecting and incorporating the voices of people living with dementia into your organization’s processes and goals
  • Organization-wide knowledge and awareness about the effects of dementia on the person, thereby reducing stigma against dementia
  • People living with dementia feeling empowered to have a say in your organization’s decisions and policies and,
  • In turn, more involvement from people living with dementia ensuring that your organization is developing information and resources that speak effectively to their experiences and needs.

How Can I Plan Ahead

Loss of mental capacity can happen unexpectedly, so its sensible to make plans in case youre unable to make your own decisions. You can:

  • use a Lasting Power of Attorney to appoint someone to make decisions on your behalf. This includes decisions about property and financial affairs as well as your health and personal welfare
  • make an advance decision to refuse treatment. This sets out the situations where you would want to refuse medical treatment if you lacked the capacity to make or communicate that in future. Advance decisions are legally binding. However, you cant generally use one to refuse treatment you might be given if youre detained under the Mental Health Act
  • make an advance statement. This sets out your wishes, beliefs, feelings and values about your care and treatment in case youre unable to communicate them in future. It isnt legally binding but can help family, friends and medical professionals make decisions on your behalf.

Mind and Compassion in Dying have produced a factsheet about how advance decisions and advance statements work.

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Medical And Legal Consequences Of Impaired Decision

In the previous section, we discussed the various neuropsychological processes contributing to normal decision-making and impaired decision-making in dementia. In the next section, we will apply this knowledge to better understand the enormous impact impaired decision-making can have on dementia patients, families, and society. This includes, for example, physical injuries may occur from impaired driving, use of dangerous tools, or weapons poor financial decision-making leading to significant loss of wealth and the risk of elder abuse and exploitation. Because of these concerns, measures are often taken to limit autonomy in patients with impaired decision-making. Such interventions are not taken lightly, and it is therefore important to ensure that these determinations are made as accurately as possible. In the following sections on capacity, competency, and surrogate decision-making, we will discuss how determinations of impaired decision-making are made, highlighting instances where decision-making research could help to inform these processes.

Making Decisions And Managing Difficult Situations

Common Questions about Driving with Dementia

Find out more about the Mental Capacity Act 2005 and get advice on how to approach decision-making for someone with dementia.

  • You are here: Making decisions and managing difficult situations
  • Making decisions and managing difficult situations

    Living with dementia involves making a wide range of decisions, including those about practical and ethical issues. As dementia progresses, some of these decisions will fall to a carer. Carers often ask at what point they take over the decision-making process, and on what basis they should make them. The answers to these questions will vary between people and situations. However, there are some guidelines that should be used as the basis for all decision making.

    As someones dementia progresses, their cognitive abilities will decline, which will affect their ability to make their own decisions. When this happens, carers, family and health and social care professionals will need to become more involved in the decision-making process.

    This section offers guidance to carers on the relevant law . It also offers advice on how to approach decisions in a range of difficult areas.

    Previous Section

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    Facilitators And Inhibitors Of Shared Decision

    Care partners and professionals

    Where roles in decision-making are grounded in relationships , the roles of care partners and workers can be facilitators or barriers .

    Only one study explicitly raised the question of who should participate in decision-making and what their roles should be. Yet the impact of the relationship between the person living with dementia and their care partner on decision-making involvement is well documented. There is little research focusing on shared decision-making relationships in extended care setting with the majority being undertaken in care dyads within the home environment .

    Tools and resources

    Four studies developed and/or evaluated the use of tools and resources to facilitate shared decision-making for someone with cognitive impairment. Two studies evaluated the use of Talking Mats which are a picture-based, communication framework that allow people to indicate their feelings within a given topic by placing the relevant image on a visual scale. The first study compared TMs with structured and unstructured communication methods with five people in the late stages of Huntingtons disease and the second study compared TMs with usual communication methods with 18 people living with dementia and their care partners. Both studies reported improvements in satisfaction with discussions when using TMs, although in one study the feeling of involvement was significantly higher for the carers than for the people living with dementia.

    A Capacity Dilemma: Helping With Medication

    Often care workers are expected to help people with dementia to take their medication. As a care worker, you need to know if the person is making their own decisions about agreeing to take the medication or if it is being given to them in their ‘best interests’ .

    The doctor prescribing the medication should have decided this already and let the staff supporting the person know. This should be written in the care plan.

    The care staff wouldn’t need to do a capacity assessment each time they supported the person, but should be alert for any evidence that the person might have improved their ability to consent to taking the medication. If this happens, make sure the doctor knows that you think the person’s capacity has improved.

    Where the person lacks capacity, it would be OK to encourage the person to take their medication if they are gently resisting it. But it wouldn’t be good practice to ignore any evident distress about taking the medication, or for the staff member to hide the medication in food or to use a form of restraint so the person takes the medication. This can only happen if it is written in the care plan and agreed by a proper best interests process as being in the person’s best interests.

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    Support For Dementia Caregivers At The End Of Life

    Caring for people with Alzheimers or other dementias at home can be demanding and stressful for the family caregiver. Depression is a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.

    Many family members taking care of a person with advanced dementia at home feel relief when death happensfor themselves and for the person who died. It is important to realize such feelings are normal. Hospicewhether used at home or in a facility gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.

    What Happens If You Don’t Make An Lpa

    Making tough dementia caregiver decisions

    If you don’t make an LPA and later become unable to make decisions yourself, nobody will legally be able to make decisions for you.

    This can make things difficult for your family as they won’t be able to pay bills or make decisions about your care.

    When this happens, someone may need to apply to the Court of Protection to become a deputy. This gives similar powers to that of an attorney. But it’s a time-consuming and expensive process.

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    What Can Cause A Lack Of Mental Capacity

    Lack of mental capacity can be caused by many things. It can be:

    • permanent, where someones ability to make decisions is always affected. This could be because of a stroke or brain injury, severe dementia or learning disability
    • temporary, where someone has capacity at some times but not others. This could be because of a mental health problem, substance or alcohol misuse, or confusion, drowsiness or unconsciousness because of an illness or treatment.

    Variability In How Persons With Dementia Participate In Decision Making

    A major finding was that persons with moderate dementia were involved in decisions, supporting several studies . In earlier times, the voices of persons with dementia were not heard because unquestioned assumptions of incompetence led others to make decisions on their behalf . This resulted in a culture of therapeutic nihilism and custodial care . In contrast, persons in this study demonstrated how they participated in decision making in various ways, giving new perspectives on how to improve dementia care.

    Findings from this study expand on existing work by describing new and different levels of involvement not identified by Thompson such as Pseudo-autonomous decision making and Delegating decision making when persons with dementia were involved in decision making.

    Pseudo-autonomous decisions were implicit rather than explicit and often rooted in family members or health care workers falsely assuming that they knew the wishes of persons with dementia and acted accordingly. As cognitive abilities decline, understanding relationships and clarifying values seem to take on added importance. In Thompsons study participants probably relied more on their cognitive abilities. In addition Thompson focused on the individual patients participation and not so much on relational aspects in decision making.

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    Other Ways We Engage People With Lived Experience In Our Work

    People with lived experience of dementia do not have to be members of our Advisory Group in order to engage in our work. We invite people with lived experience to engage in our work in a number of ways, such as:

    • Reviewing our educational literature to ensure the information is accurate, relevant and accessible,
    • Presenting in partnership with us ,
    • Telling their stories and raising their voices as part of awareness campaigns and
    • Participating in the research process through the Alzheimer Society Research Program.

    What If I Disagree With The Person’s Decision

    Does Dementia Affect Emotions?

    Just because you think a person is not making a sensible decision doesn’t mean that they can’t make that decision for themselves. For example, a person might choose not to eat any vegetables or fruit. Another person might choose to spend more money on alcohol than you would.

    The law says that people can make unwise decisions. For example, we all know it is unwise to smoke, but the law allows adults to do so.

    If you are worried about a decision someone has made, you might want to check that they understand what they are doing.

    The Social Care TV video, ‘Raymond’s Money’, looks at the dilemma faced by a home care worker, Wendy, who is asked by Raymond, a man newly diagnosed with dementia, to place a large sum of money on the Lottery. Wendy doesn’t think this is a good decision, but Raymond’s wishes are clear. Notes accompanying the film discuss the principles of the Mental Capacity Act and how they can be applied to this story.

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    Validity Of Capacity Assessments

    In some cases, judging capacity is straightforward, whilst in others there may be disagreement between different clinicians, assessment tools or between tool and clinician .

    Different tools have been developed for different patient groups and decision-making scenariosfor example, the University of California, San Diego Brief Assessment of Capacity to Consent is a brief screening tool to help junior researchers identify research participants who need further capacity assessment . Others are tailored for people with dementia, learning difficulties, or mental health disorders. The local legal jurisdiction also influences capacity definition and assessment. It is therefore not surprising that there is a significant variability in tool design and results.

    Dedicated instruments exist for people with major mental health disorders, where exploration of potentially abnormal beliefs is required. Groups such as those with anorexia are particularly challenging to assess, as they are typically high functioning individuals, and their illness is part of their personal identity. Patients may fail a test of capacity due to fixed, abnormal illness-related beliefs, rather than impaired understanding, recall or communication . Decisions about mental capacity should never have a blanket approach, and professionals should tailor their methods to the individual and decision in question.

    Lack Of Integration Of Decision

    Finally, there is a lack of integration between tasks designed to test certain aspects of decision-making, and tools designed specifically to assess for capacity to make specific types of decisions. For example, reward and punishment may contribute to financial decision-making, but tasks used to test these constructs in other settings may not translate well to the specific situation of financial decision-making. Additionally, other processes, such as reasoning and planning, also contribute to these decisions, and the interaction between such domains may not be apparent when each domain is tested separately.

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    Case : Parkinsons Disease With Impulse Control Disorder

    A 68 year-old man with Parkinsons disease for the past 7 years has recently been started on a dopamine agonist. In the last three months he has begun gambling excessively and soliciting prostitutes, losing nearly $100,000 dollars from his savings. He is now estranged from his wife and living with a friend, but is on the verge of losing his housing as he recently started using cocaine. He has now been summoned to court by his debtors.

    Impulse control disorders are increasingly recognized to occur in patients with Parkinsons disease . These behaviors include pathological gambling, addiction, sexual behaviors, and binge eating. Un-medicated patients with Parkinsons disease do not have an increased incidence of ICD compared to healthy controls . However, up to 25% of medicated patients will develop ICD once started on medications . ICD are more common in patients being treated with dopamine agonists compared to other medicines for Parkinsons disease , and up to 39% of patients started on a dopamine agonist will develop an ICD .

    Representative PET scan from patient with Parkinsons Disease

    Dopamine tracer scan showing normal update of tracer in the basal ganglia in a patient with Alzheimers Disease vs. reduced uptake in a representative patient with Parkinsons Disease .

    Early And Middle Stages Of Vascular Dementia

    How Dementia Affects Language Skills

    Some symptoms may be similar to those of other types of dementia. Memory loss is common in the early stages of Alzheimer’s, but is not usually the main early symptom of vascular dementia.

    The most common cognitive symptoms in the early stages of vascular dementia are:

    • problems with planning or organising, making decisions or solving problems
    • difficulties following a series of steps
    • slower speed of thought
    • problems concentrating, including short periods of sudden confusion.

    A person in the early stages of vascular dementia may also have difficulties with:

    • memory – problems recalling recent events
    • language – eg speech may become less fluent
    • visuospatial skills – problems perceiving objects in three dimensions.

    As well as these cognitive symptoms, it is common for someone with early vascular dementia to experience mood changes, such as apathy, depression or anxiety. Depression is common, partly because people with vascular dementia may be aware of the difficulties the condition is causing. A person with vascular dementia may also become generally more emotional. They may be prone to rapid mood swings and being unusually tearful or happy.

    Need advice on managing behaviour changes?

    Read our top tips for managing and reducing out of character behaviour.

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    Group To Individual Inference Problem

    Research in decision-making utilizes the scientific method: experiments are conducted to in a large number of subjects and statistically tested to determine commonalities at the group level. In contrast, capacity, whether in the medical or legal setting, involves determining whether an individual patient has impaired decision-making specifically related to the question at hand. This discrepancy between scientific knowledge at the group level, and applied science at the individual level, has been called the group to individual inference problem. This problem is very similar to those faced by clinicians every day, where diagnoses, treatments, and outcomes informed by clinical research at the group level must be applied to decisions regarding specific, individual patients.


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