Supporting people with dementia requires a compassionate and person-centered approach. The impact of dementia can be overwhelming for both the individual and their loved ones. Therefore, providing adequate support is crucial to improving the quality of life for individuals with dementia.
By the end of this topic, you will understand:
- Person-centred approaches for supporting people living with dementia
- Developing and implementing individualised service plans
- Signs of elder abuse and neglect, along with their risk factors
- Responding to and reporting signs of abuse and neglect.
- Methods to engage with a person living with dementia
- Dealing with various types of stressors
- Assistive technologies – role, scope and breadth in supporting people with dementia
What is Person centred approach and its principles
A person-centered approach is a philosophy and practice that emphasizes the individual's needs, preferences, and goals in all aspects of care and support. When supporting activities that enhance self-esteem and pleasure, minimize boredom, and create a sense of personal value and self-worth, the following principles should be observed:
- Acknowledgement and Validations of feelings: Person-centered care starts with respect for the individual's autonomy, dignity, and privacy. This involves listening to their opinions and preferences, recognizing their strengths and abilities, and involving them in decision-making processes.
- Collaboration and participation through empowerment: Empowering individuals to make choices and take control of their lives can significantly enhance their self-esteem and sense of personal value. This involves providing opportunities for self-expression, promoting independence, and encouraging them to participate in meaningful activities that align with their interests and goals.
- Positive relationships and reinforcement: Developing positive and trusting relationships with individuals is essential to providing person-centered care. This involves taking the time to understand their needs and preferences, showing empathy and compassion, and being responsive to their emotions and concerns.
- Individualized care planning to provide tailored support: Person-centered care planning involves tailoring support to the individual's needs and goals. This includes identifying their strengths, preferences, and interests, as well as any barriers or challenges they face. From there, support plans can be developed that incorporate activities that promote pleasure, minimize boredom, and enhance self-esteem.
- Flexibility and adaptability: Person-centered care should be flexible and adaptable to accommodate the changing needs and preferences of the individual. This involves regularly reviewing support plans and activities, and making adjustments as necessary.
An example of a person-centered approach to support activities that enhance self-esteem and pleasure might be to work with an individual to identify their interests and hobbies, and then support them to pursue these activities in a way that is enjoyable and fulfilling for them.
For instance, if an individual is interested in gardening, the support worker could help them to create a small garden in their backyard or balcony. This could involve researching suitable plants and materials, helping the individual to select and purchase these items, and working alongside them to plant and care for the garden.
Throughout the process, the support worker could encourage the individual to take ownership of the project and make decisions about what to plant, where to place the plants, and how to care for them. This would not only provide a source of pleasure and enjoyment for the individual, but also enhance their sense of self-worth and accomplishment as they see the results of their efforts.
The support worker could also help the individual to connect with other gardeners or horticultural groups in the community, which would provide opportunities for social interaction and a sense of belonging. This would further support the individual's self-esteem and pleasure, while also promoting their overall well-being.
Developing and implementing individualised plan
Developing and implementing individualized care plans for people with dementia in aged care in Australia involves a person-centered approach that takes into account the unique needs, preferences, and abilities of each individual. Here are some steps that may be helpful in developing and implementing such a plan:
- Conduct a comprehensive assessment: A thorough assessment should be conducted to identify the person's strengths, abilities, preferences, and care needs. This assessment should involve the person with dementia, their family and/or carers, and relevant healthcare professionals.
- Develop a person-centered care plan: Based on the assessment, a person-centered care plan should be developed that reflects the person's goals, preferences, and abilities. The plan should also address any health and safety concerns and provide guidance on how to manage symptoms and behaviors associated with dementia.
- Implement the care plan: The care plan should be implemented with the involvement of the person with dementia, their family and/or carers, and relevant healthcare professionals. The plan should be regularly reviewed and updated to ensure that it remains relevant and effective.
- Provide ongoing support and training: Ongoing support and training should be provided to the person with dementia, their family and/or carers, and relevant healthcare professionals to ensure that the care plan is implemented effectively and that everyone involved in the person's care is equipped with the necessary skills and knowledge.
Resources:
Planning Individual Care Plan in Dementia Care
Personalised Support and Care Planning
The physical, social, and family environment can all have a significant impact on the ability of individuals with dementia to interact and engage with their surroundings. Some ways in which each of these environments can impact engagement are:
- Physical environment: The physical environment refers to the physical surroundings in which individuals with dementia live, including their home or care facility. Modifications to the physical environment can be made to reduce confusion, promote safety, and increase engagement. For example, removing tripping hazards, using contrasting colors to identify different areas, and labeling drawers and cupboards can make the environment more accessible and easier to navigate. The physical environment can also include sensory stimulation, such as music or aromatherapy, to promote relaxation and reduce anxiety (Heller et al., 2008).
- Social environment: The social environment refers to the social relationships and interactions that individuals with dementia have with others, including caregivers, family members, and peers. Socialization can help reduce isolation and increase engagement for individuals with dementia. Encouraging participation in social activities and providing opportunities for group interaction can also help to stimulate conversation and provide a sense of purpose and belonging (Sabat, 2017).
- Family environment: The family environment refers to the home environment and social relationships of the family members of individuals with dementia. Providing family members with education about dementia and offering them support and counseling can help them to cope with the challenges of caring for a loved one with dementia. Family members can also be encouraged to participate in activities with their loved one with dementia to promote engagement and socialization (Sabat, 2017).
- Sensory Environment: The sensory environment, including the sounds, smells, and textures in the environment, can affect a person living with dementia's ability to engage and interact. Loud noises, strong odors, or uncomfortable textures can be overwhelming and distressing for a person with dementia, leading to increased agitation and withdrawal. Creating a calm, sensory-friendly environment with soft lighting, familiar smells, and pleasant textures can help create a positive environment for engagement.
- Emotional Environment: The emotional environment, including the emotional state of the person with dementia and those around them, can impact their ability to engage and interact. People with dementia are sensitive to emotions and can pick up on the emotional cues of those around them. If caregivers and family members are stressed, anxious, or impatient, it can affect the person's mood and behavior, making it challenging for them to engage.Creating a positive, calm, and emotionally supportive environment can help the person with dementia feel more at ease and facilitate engagement
Overall, creating an environment that is safe, accessible, and supportive is important for individuals with dementia to maintain engagement and interaction with their surroundings.
Definition of Abuse and Neglect
Abuse is usually defined as any action that causes intentional harm to the person. Unintentional harm resulting from accidents may be included under the umbrella of ‘neglect’, providing the harm is caused by negligence or failure to provide a safe environment. Neglect is usually defined as a failure to provide for a person’s needs, whether intentionally or unintentionally, resulting in harm to the person’s wellbeing, for example, failure to meet a person’s physical or survival needs by providing a safe environment, sufficient food or water, shelter and health care. It also includes failure to meet social, psychological and emotional needs, such as not helping the person take part in meaningful activity and have interaction with other people, and not providing emotional support.
Abuse and neglect are most commonly carried out by people in trusted positions close to the person, such as family members and carers. Almost always, the abuser has more power than the person being.
In Australia, the Australian Law Reform Commission (ALRC) defines elder abuse as "a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person." The ALRC includes the same types of abuse as the WHO, as well as systemic abuse, which refers to the mistreatment of older people by organizations or systems (ALRC, 2017).
Forms of Abuse and Neglect
People living with dementia in Australia are at an increased risk of experiencing various forms of abuse, neglect, and exploitation. Some of the common forms of mistreatment include:
- Physical abuse: Physical abuse is the intentional use of physical force against a person that results in harm, injury, or pain. Physical abuse of individuals with dementia may include hitting, pushing, restraining, or rough handling (Alzheimer's Australia, 2016).
- Emotional abuse: Emotional abuse involves the use of verbal or non-verbal communication to cause fear, anxiety, or distress. Emotional abuse of individuals with dementia may include yelling, belittling, or intentionally causing confusion (Australian Human Rights Commission, 2019).
- Neglect: Neglect refers to a failure to provide adequate care, support, or supervision that results in harm or risk of harm. Neglect of individuals with dementia may include failure to provide basic needs, such as food, water, or medication, or failure to provide adequate hygiene or medical care (Alzheimer's Australia, 2016).
- Financial abuse: Financial abuse involves the exploitation of an individual's financial resources, property, or assets for personal gain. Financial abuse of individuals with dementia may include theft, fraud, or coercion (Australian Human Rights Commission, 2019).
- Sexual abuse: This includes any unwanted sexual contact or activity with a person with dementia, whether or not they are able to give consent.
Risk Factors for Abuse and Neglect
Risk factors for being abused or neglected are associated with powerlessness. Risks for people who are dependent on others for their needs, such as children, people with disabilities, older people and people living with dementia, are higher than for people who are more able to speak up or defend themselves. People living with dementia, because of the nature of the disease, can experience significantly higher degrees of risk:
- Communication barriers may make it difficult for them to tell someone what is happening.
- Memory lapses may mean that they might not recall the abuse.
- Confusion may cause them to be unsure about what is real and what is not.
- Social isolation can mean that there is nobody to notice the abuse or support the person to address it.
- Negative stereotypes and assumptions about older people and about people living with dementia might affect the person’s credibility and make others less likely to believe them or take their accusations seriously.
- Devaluation may result in discrimination and ill treatment.
- Hostile behaviours, aggression and personality changes associated with dementia may make others more likely to respond with aggression and ‘lash out’ – the stress of caring for a person with dementia may also cause these reactions in carers.
Other factors that can put a person living with dementia at risk of abuse and neglect include:
- A history of domestic abuse or family violence in the household (including abuse/violence initiated by the person with dementia)
- Substance abuse
- Severity of dementia
- Living in regional or remote areas
- Lack of awareness of rights and support service
Signs and indicators of elder abuse and neglect
Elder abuse and neglect can be difficult to detect, as older people may be hesitant to report abuse or may not be able to do so due to physical or cognitive impairments. However, there are several signs and indicators that may suggest elder abuse or neglect. Some of these signs and indicators are:
- Physical abuse: Unexplained bruises, burns, cuts, or injuries; frequent falls or unexplained fractures; restrained or tied up against their will.
- Emotional abuse: Agitation, fear, anxiety, or withdrawal; lack of interest or participation in activities they used to enjoy; sudden change in behavior or mood.
- Sexual abuse: Unexplained sexually transmitted infections; torn, stained, or bloody underwear; unexplained genital or anal pain.
- Financial abuse: Unexplained or sudden changes in financial situation; missing money or valuables; forged signatures or coercion to sign documents.
- Neglect: Dehydration or malnutrition; untreated medical conditions; poor hygiene or living conditions; bed sores or pressure ulcers.
It's important to note that these signs and indicators may not necessarily indicate abuse or neglect and can also be caused by other factors. However, if these signs and indicators are present, it's important to investigate further to ensure the safety and well-being of older people.
Responding to Abuse and Neglect
As a support worker, you will be on the ‘front line’ for protecting your clients from harm and exploitation, so it is particularly important for you to recognise signs of abuse or neglect and to respond appropriately:
- Take care of any injuries the person has received, either by providing first aid or ensuring that the person receives appropriate medical treatment.
- Reassure the person, help them to feel safe and make sure they are physically comfortable. Collect as much information about what has happened to the person as you can.
- Report the situation as soon as possible to your immediate supervisor. Document your observations and actions accurately and objectively.
- Remember to always follow your organisation’s policies and procedures for responding to the abuse or harm, and reporting harm to your supervisor.
Legislative requirements in Australia to report neglect and abuse of elderly with dementia
Compulsory reporting requirements of abuse of adults with disabilities or aged care are also strictly enforced. In most cases, your manager, such as a nurse or supervisor, is required to report to police or the government department any suspected or actual signs of physical or sexual abuse. In some states, anyone who sees or suspects signs of physical or sexual abuse has a legal obligation to go directly to the police, or to be satisfied that the police have been contacted.
In other states, your legal responsibilities are only to report what you have seen or heard to your direct manager.
Resources
You may like to read a link from the Aged Care Quality and Safety Commission. The department developed the Serious Incident Report Scheme (SIRS) which helps to prevent and reduce incidences of neglect and abuse in residential aged care services by the Australian Government. For further information regarding SIRS, please click here.
You might also like to read through the National Disability Services information that provides detailed information about understanding, preventing and responding to abuse. You can find the link here.
‘Reportable Incidents Under the Serious Incident Response Scheme (SIRS)
Watch this video from the Aged Care Quality and Safety Commission to learn more about reporting responsibilities in residential aged care.
The Legislations and Regulatory authority related to abuse or neglect include:
- Aged Care Act 1997: The Aged Care Act requires approved providers of aged care services to have procedures in place for reporting suspected or alleged cases of abuse or neglect of care recipients. This includes reporting to the Aged Care Quality and Safety Commission and other relevant authorities.
- National Aged Care Mandatory Reporting Scheme: The National Aged Care Mandatory Reporting Scheme requires approved providers and their staff to report certain incidents, including suspected or alleged abuse or neglect of a care recipient, to the Aged Care Quality and Safety Commission. Failure to report such incidents can result in penalties.
- State and Territory Legislation: Each state and territory in Australia has its own legislation regarding the reporting of abuse and neglect of vulnerable adults. For example, in New South Wales, the Crimes (Domestic and Personal Violence) Act 2007 requires anyone who suspects that an older person is at risk of or experiencing abuse or neglect to report it to the NSW Police or to the NSW Ageing and Disability Commission.
- Aged Care Quality Standards: The Aged Care Quality Standards set out the expected outcomes for care recipients and the requirements for aged care providers to meet those outcomes. Standard 3 requires providers to have systems in place to detect, prevent and respond to abuse and neglect, and to promptly and appropriately report any allegations or incidents.
- Criminal Code Act 1995 (Commonwealth): This act makes it an offense to engage in any form of elder abuse, including emotional abuse, that causes harm or distress to an older person. The penalty for the offense can range from fines to imprisonment, depending on the severity of the abuse.
- Elder Abuse Prevention Interim Measures Act 2015 (Victoria): This act provides a framework for responding to and preventing elder abuse in Victoria. It defines elder abuse as any act or omission that causes harm or distress to an older person and includes emotional abuse.
In summary, carers in Australia must follow legislative requirements including the Aged Care Act, the National Aged Care Mandatory Reporting Scheme, State and Territory Legislation, and the Aged Care Quality Standards to report cases of neglect and abuse of elderly with dementia. It is essential that these requirements are followed to ensure the safety and wellbeing of vulnerable older adults.
In addition, the Dementia Behaviour Management Advisory Service (DBMAS) helps staff and carers to support people living with dementia experiencing changes to their behaviour by providing assessment, clinical support, care planning, mentoring, linking to current research and a 24-hour help line.
They partner with:
- Dementia Support Australia who is the national provider of DBMAS
- Dementia and Aged Care Services Fund; and
- The Severe Behaviour Response Teams
Resources
- Read the following article for an overview of reporting procedures for workers in residential aged care services: ‘Reportable Assault Flowchart for Residential Aged Care’ from the Aged Care Quality and Safety Commission.
- These articles contains useful information about mandatory reporting, types of abuse, and indicators of abuse: Mandatory Reporting of Suspicion of Abuse (Child and Elderly).
- ‘Subject to decisions by the Federal Parliament, from 1 April 2021 it is expected that compulsory reporting legislative requirements will be repealed and approved providers will be subject to the legislative requirements of the Serious Incident Response Scheme (SIRS). For further information, please download here.
Communicating with a person living with dementia can be challenging, but there are several strategies and principles that can help to enhance communication and promote understanding. Here are several verbal and non-verbal communication strategies that can help to promote engagement and understanding.
Some of these strategies include:
- Verbal communication strategies
- Non-verbal communication strategies
- Culturally sensitive and safe communication strategies
Verbal communication strategies
- Speak clearly and concisely: Use simple, clear language and speak in a calm, reassuring tone.
- Use short sentences: Long, complex sentences can be difficult for a person with dementia to understand.
- Repeat important information: Repetition can help the person to remember important information.
- Use positive language: Use positive language and avoid using negative words or phrases that may cause distress.
- Ask simple questions: Use closed-ended questions that require a yes or no answer to help the person feel more comfortable.
- Avoid arguing or correcting: Correcting or arguing with a person with dementia can cause frustration and confusion.
Non-verbal communication strategies
- Use body language: Use non-verbal cues such as facial expressions, gestures, and touch to help convey meaning.
- Maintain eye contact: Maintaining eye contact can help to establish a connection and show that you are listening.
- Smile: Smiling can help to create a positive and welcoming atmosphere.
- Use touch: Appropriate touch, such as a gentle hand on the shoulder, can help to convey reassurance and support.
- Use visual aids: Visual aids such as pictures, photographs, and objects can help to reinforce communication and improve understanding. It's important to remember that every person with dementia is unique, and communication strategies should be tailored to the individual's needs and preferences. What works for one person may not work for another, so it's important
Below are some clear communication guidelines that will help you while working with a person with dementia.
Do | Do Not |
Treat the person with respect and remain calm | Argue with the person |
Speak clearly and use short sentences | Give orders |
Focus on one idea at a time | tell them what they cannot do |
Break instructions into simple steps | Talk the person down |
Be aware of your own body language | Ask a lot of questions that rely on memory |
Avoid any distractions when communicating such as TV, radio ect | Talk about the person in front of them as if they are not present |
Keep steady routines | Use a condescending tone when talking to the person |
Culturally sensitive and safe communication strategies
Taking into account cultural differences and respecting the person's cultural background, language, and beliefs to ensure effective communication. Some effective strategies include:
- Being aware of cultural norms and values: Understanding the cultural norms and values of the person can help you to tailor your communication approach and avoid misunderstandings.
- Using familiar language and terminology: Using language and terminology that is familiar to the person can help to enhance communication and promote understanding.
- Being respectful of cultural beliefs and practices: Being respectful of cultural beliefs and practices can help to promote a sense of trust and respect in the communication.
- Using visual aids: Using visual aids such as pictures or drawings can help to support communication and enhance understanding.
- Avoiding assumptions: Avoiding assumptions about the person's cultural background or beliefs can help to promote a sense of respect and understanding.
- Listening actively: Actively listening to the person's responses and validating their feelings can help to promote a sense of understanding and trust in the communication.
- Seeking support from cultural advisors: Seeking support from cultural advisors or interpreters can help to promote effective communication and understanding.
It's important to note that these strategies may need to be adapted based on the individual needs and preferences of the person living with dementia. Communication should always be tailored to the person's individual needs and abilities, and care should be taken to ensure that the person feels heard, understood, and valued.
Some other communication and therapeutic techniques include:
- Reality orientation
- Reassuring words, phrases, and body language
- Validation
- Reminiscence
Reality orientation
Using verbal cues or physical aids to remind the person of their surroundings or current situation to increase their sense of awareness and understanding. Examples include:
- Use clocks and calendars: Place clocks and calendars in the person's room or living space to help them keep track of the time, date, and day of the week.
- Provide familiar objects: Provide familiar objects such as family photographs, favorite books, or music to help the person feel more comfortable and connected to their past.
- Label objects and rooms: Label objects and rooms in the person's living space to help them navigate their surroundings and reduce confusion.
- Encourage conversation: Engage the person in conversation about their past experiences, including family and friends, hobbies, and interests. This can help to stimulate their memory and keep them connected to their personal history.
- Avoid correcting or contradicting: If the person makes a mistake or has a misunderstanding, avoid correcting or contradicting them. Instead, validate their feelings and try to redirect the conversation to a more positive or neutral topic.
Reassuring words, phrases, and body language
Using calm and soothing words, gentle touch, or a reassuring tone of voice to provide comfort and reassurance to the person. Examples include:
- Use a calm and reassuring tone of voice: Speak in a calm and reassuring tone of voice to convey a sense of empathy and understanding.
- Use simple language: Use simple language and avoid complex sentences or abstract concepts that may be difficult for the person to understand.
- Repeat key phrases: Repeat key phrases or concepts that may be important to the person to help them maintain their focus and memory.
- Use positive reinforcement: Provide positive reinforcement by using words or phrases such as "good job" or "well done" to encourage the person and reinforce their sense of accomplishment.
- Use non-verbal cues: Use non-verbal cues such as a gentle touch, a smile, or a nod to convey empathy and understanding.
- Use physical gestures: Use physical gestures such as holding the person's hand, offering a hug, or sitting close to them to provide comfort and support.
- Validate their feelings: Acknowledge the person's feelings and emotions and reassure them that their feelings are valid and understandable.
Validation
Accepting and acknowledging the person's reality, experiences, and emotions, even if they do not match the objective reality. This can involve using phrases like "I understand how you feel" or "Tell me more about that."Examples include:
- Listen attentively: Listen attentively to the person with dementia and try to understand their point of view. This can help to build trust and promote effective communication.
- Acknowledge their feelings: Acknowledge the person's feelings and emotions and validate their experiences, even if they may not be accurate or consistent with reality.
- Use phrases such as "I understand" or "I hear what you are saying": Use phrases such as "I understand" or "I hear what you are saying" to convey empathy and understanding.
- Redirect the conversation: If the person is expressing distress or discomfort, try to redirect the conversation to a more positive or neutral topic.
- Avoid arguing or correcting: Avoid arguing or correcting the person, as this can lead to frustration or agitation.
- Provide comfort and reassurance: Provide comfort and reassurance by using calming words or phrases, such as "It's okay, I'm here with you."
- Use non-verbal cues: Use non-verbal cues such as a gentle touch, a smile, or a nod to convey empathy and understanding.
Reminiscence
Encouraging the person to reminisce about their past experiences, memories, and interests to promote engagement and social interaction.
- Use sensory cues: Memories are often tied to sensory experiences, so try to incorporate sensory cues into your interactions with the person. For example, you could play music from their era or bring in items with familiar scents like lavender or cinnamon.
- Use open-ended questions: Avoid asking questions that require a yes or no answer. Instead, ask open-ended questions that allow the person to share more detailed stories about their past experiences. For example, you could ask, "What was your favorite vacation?" or "Tell me about your first job."
- Use visual aids: Photographs, videos, and other visual aids can help trigger memories and spark conversations. You could create a memory box filled with items from the person's past, or look through old photo albums together.
- Focus on positive memories: Reminiscing about positive experiences can be a mood booster for people with dementia. Try to focus on happy memories and avoid bringing up difficult or painful topics.
Communication techniques to use when a person with dementia expresses distress
- Validate their feelings: Acknowledge the person's feelings and emotions, and let them know that it's okay to feel upset or frustrated.
- Use calming words or phrases: Use calming words or phrases such as "It's okay, I'm here with you" or "Let's take a deep breath together" to help the person feel more calm and grounded.
- Provide physical comfort: Provide physical comfort by holding the person's hand, offering a hug, or sitting close to them to provide a sense of security and reassurance.
- Use distraction techniques: Use distraction techniques such as singing a song, showing a photo album, or engaging in a favorite activity to help redirect the person's attention away from the source of their distress.
- Identify and address the source of distress: If possible, try to identify the source of the person's distress and address it directly, such as providing pain relief or adjusting the environment to reduce sensory overload.
- Avoid minimizing or dismissing their distress: Avoid minimizing or dismissing the person's distress, as this can lead to further frustration or agitation.
- Seek professional help if needed: If the person's distress persists or worsens, seek professional help from a healthcare provider or dementia specialist.
It's important to note that these methods should be used with sensitivity and respect for the person's dignity and autonomy. Communication should always be tailored to the person's individual needs and preferences, and care should be taken to ensure that the person feels heard, understood, and valued.
Stressors refer to any factors or conditions that can cause stress or distress to older adults, including those living with dementia, as well as their families, caregivers, and healthcare professionals. Stressors can be physical, emotional, social, or environmental and can vary depending on the individual's unique needs and circumstances.
For older adults, stressors can include chronic health conditions, functional limitations, cognitive impairment, and social isolation. In aged care facilities, stressors can include lack of privacy, loss of independence, and changes in routine or environment.
For caregivers and healthcare professionals, stressors can include burnout, inadequate resources, and high workload.
Physical Stressors
Physical stressors can have a significant impact on people with dementia, and can include:
- Infections: Infections such as urinary tract infections (UTIs), pneumonia, and skin infections can cause physical discomfort, increased confusion also called delirium, and increased behavioural changes such as restlessness, agitation, decreased appetite and hydration which may lead to malnutrition and worsening of dementia symptoms such as further cognitive decline, difficulty communicating etc.
- Nutrition and dehydration: Poor nutrition and dehydration can have negative impacts on physical health, cognitive function, and emotional well-being in people with dementia. This can lead to weight loss, weakness, and increased vulnerability to infections, person may be prone to increased risk of falls due to muscle weakness,dizziness or loss of balance, Increased confusion: Changes in appetite and weight loss/gain can impact the person's physical health, which in turn can impact their cognitive function. For example, if the person is not getting enough nutrients, they may experience increased confusion or disorientation. Increased stress and anxiety: Changes in routine or illness can be stressful for people with dementia, and this can further impact their appetite and overall well-being. It's important to monitor for signs of stress and anxiety and provide appropriate support and reassurance. Increased risk of urinary tract infections (UTIs): Dehydration can lead to concentrated urine, which can increase the person's risk of UTIs. UTIs can be especially problematic for people with dementia, as they can cause a temporary worsening of cognitive function and behavior changes.
- Continence: Incontinence can be a distressing and embarrassing experience for people with dementia, and can lead to a loss of dignity and self-esteem. Physical discomfort: Incontinence can cause physical discomfort such as skin irritation, rashes, and infections. It can also lead to dehydration if the person with dementia avoids drinking fluids to prevent accidents. Increased risk of falls: If the person with dementia needs to go to the bathroom frequently, this increases their risk of falls, especially if they have difficulty with mobility or balance. Loss of independence: Incontinence can lead to loss of independence, as the person with dementia may need assistance with toileting and personal care.Social isolation: Fear of accidents can lead to social isolation, as the person with dementia may avoid leaving the house or engaging in social activities. Emotional distress: Incontinence can be embarrassing and humiliating, causing emotional distress for the person with dementia. They may feel ashamed or frustrated and may be more prone to depression and anxiety.
- Pain: People with dementia may be less able to communicate their pain effectively, and may therefore experience pain that goes unnoticed and untreated. This can lead to change in behaviour such as increased agitation, confusion, and behavioral problems. It can lead to sleep disturbances: Pain or discomfort can cause sleep disturbances, leading to fatigue and further exacerbation of behavioral symptoms. Social isolation: The person with dementia may avoid social activities or interactions due to discomfort or pain. Emotional distress: Pain or discomfort can cause emotional distress, such as anxiety, depression, or fear.
Social stress
Social stress in dementia refers to the stress that arises from the person's social environment or interactions with others. Social stress in people with dementia can arise from various factors, including communication difficulties, changes in social roles, social isolation, caregiver stress, challenging behaviors, and overwhelming social environments. Communication difficulties can cause frustration and stress when the person with dementia struggles to express themselves or understand others. Changes in social roles, such as becoming dependent on others for care, can cause stress and a loss of identity. Social isolation due to the stigma surrounding dementia or a lack of understanding from others can lead to loneliness and feelings of exclusion. Caregiver stress can also impact the person with dementia, and challenging behaviors can create social stress for the person and those around them. Addressing the causes of social stress is crucial to maintain the person's quality of life and well-being.
Impact of Social Stress
- Social stress can lead to increased behavioral and psychological symptoms of dementia (BPSD), such as aggression, wandering, and repetitive behaviors.
- Social stress can reduce the quality of life of individuals with dementia, leading to feelings of isolation and loneliness.
- Social stress can affect the emotional well-being of individuals with dementia, causing depression, anxiety, and other mood disorders.
- Social stress can lead to changes in sleep patterns and appetite, which can further exacerbate the symptoms of dementia.
- Social stress can affect the physical health of individuals with dementia, leading to a decline in overall health and an increased risk of falls and other health complications.
- Social stress can increase the risk of institutionalization, as individuals with dementia may require more intensive care than their caregivers can provide.
- Social stress can cause caregivers to experience burnout, reducing the quality of care provided to individuals with dementia.
Environmental Stressors
Environmental stressors are factors in a person's surroundings or living environment that can cause stress or distress. For a person with dementia, environmental stressors can exacerbate cognitive and behavioral symptoms and negatively impact their quality of life. Here are some examples of environmental stressors for a person with dementia:
- Excessive noise: Loud or unfamiliar noises, such as construction work, traffic, or loud music, can be confusing and distressing for a person with dementia. Anxiety and fear: The person with dementia may experience anxiety and fear due to the crowded or noisy living environment, which can lead to increased stress and agitation. Sleep disturbances: The overwhelming or stressful living environment can cause sleep disturbances, leading to fatigue and further exacerbation of behavioral symptoms.
- Social isolation: The person with dementia may avoid social activities or interactions due to the overwhelming or stressful living environment, leading to social isolation and decreased quality of life.
- Lack of structure or routine: Changes in routine or lack of structure can be disorienting and lead to feelings of confusion and anxiety.
- Overcrowding or lack of privacy: Living in an overcrowded or noisy environment can be overwhelming and distressing for a person with dementia, particularly if they require quiet and privacy to manage their symptoms. Physical health: The stress of living in an overwhelming or stressful environment can have physical impacts on the person's health, such as increased heart rate, high blood pressure, and weakened immune system.
- Poor lighting: Inadequate lighting can make it difficult for a person with dementia to navigate their surroundings and may exacerbate visual impairments.
- Unfamiliar surroundings: Being in an unfamiliar or unfamiliar environment, such as a hospital or unfamiliar home, can be disorienting and lead to feelings of confusion and anxiety.
It is important for caregivers and healthcare professionals to identify and address environmental stressors for a person with dementia to ensure that they feel safe and supported in their living environment. Strategies to reduce environmental stressors may include providing a structured routine, creating a calm and quiet environment, ensuring adequate lighting, and providing access to supportive care and resources.
Accumulated and Cumulative Stressors
Cumulative stressors and accumulated stressors both have a significant impact on people living with dementia. Here are the differences between the two:
- Definition: Cumulative stressors refer to the stressful events that accumulate over time, while accumulated stressors refer to the build-up of stress over time due to multiple sources.
- Timeframe: Cumulative stressors occur as a result of repeated stressful events that happen over an extended period. Accumulated stressors can occur from a single stressful event, but they also build up over time as a result of multiple sources.
- Impact: Cumulative stressors can have a long-lasting impact on the person with dementia, and they can result in physical, emotional, and psychological symptoms. Accumulated stressors can also have a significant impact on the person, but they tend to be less severe than cumulative stressors.
Impact of cumulative stress
- Increased confusion: The person with dementia may become more confused or disoriented due to the stress and changes in routine.
- Behavioral changes: The person with dementia may experience behavioral changes, such as increased agitation, aggression, or restlessness.
- Emotional distress: The person with dementia may experience emotional distress, such as anxiety, depression, or sadness, as they struggle to cope with the stress and changes in their life.
- Physical health: The stress of recent life changes can also have physical impacts on the person's health, such as decreased appetite, disrupted sleep, or weakened immune system.
Impact of accumulated stress:
- Cognitive decline: Prolonged stress can lead to cognitive decline, which can cause memory loss and difficulty with decision-making.
- Increased behavioral symptoms: Accumulated stress can increase behavioral symptoms, such as agitation, aggression, and wandering.
- Physical symptoms: Stress can cause physical symptoms, such as headaches, digestive problems, and muscle tension.
- Social withdrawal: Accumulated stress can cause a person with dementia to withdraw from social interactions, leading to loneliness and isolation.
- Poor sleep quality: Stress can disrupt sleep patterns, causing a person with dementia to have difficulty falling asleep or staying asleep.
- Depression and anxiety: Accumulated stress can increase the risk of depression and anxiety in people with dementia.
Examples: Cumulative stressors can include things like financial worries, changes in routine, and physical health problems. Accumulated stressors can include things like noise, clutter, or an overwhelming environment. Inflexible or demanding daily routines, such as rigid meal times or a lack of variety in activities, can accumulate stress over time.
Management: Managing cumulative stressors often requires identifying the sources of stress and finding ways to reduce or eliminate them. In contrast, managing accumulated stressors often involves making environmental modifications to reduce stressors' impact.
Overall, it's essential to address both cumulative and accumulated stressors in people living with dementia to maintain their quality of life and well-being. It is important for healthcare professionals and caregivers to recognize these accumulated and cumulative stressors and implement strategies to minimize their impact on the person with dementia's health and well-being. This may include providing access to supportive care and resources, promoting social engagement and meaningful activities, and addressing environmental stressors.
Assistive technology (AT) refers to devices or equipment designed to support people with disabilities in completing daily tasks or activities that they may otherwise have difficulty performing. For people with dementia, assistive technology can help promote independence and improve quality of life. These technologies can range from simple, low-tech devices such as eyeglasses or canes, to more complex, high-tech devices such as communication aids, computer software, or prosthetic limbs.
Assistive technology can help individuals with disabilities or limitations to participate more fully in their daily lives and to achieve greater independence. Some specific examples include:
- Maintaining and promoting independence: Assistive technologies can help people with dementia complete daily tasks and activities independently, reducing their reliance on caregivers. For example, cognitive aids such as memory apps or digital organizers can help people with dementia remember important information or appointments, while medication dispensers or pill reminders can help them manage their medications more effectively. Other technologies, such as smart home systems or automated lighting, can help people with dementia navigate their environment safely and more independently.
- Enabling inclusion and participation: Assistive technologies can also help people with dementia stay connected to their communities and maintain social relationships. For example, video conferencing tools or social media platforms can help people with dementia stay in touch with family and friends, while online support groups or discussion forums can provide opportunities for social interaction and support. Other technologies, such as virtual reality or reminiscence therapy tools, can help people with dementia engage in meaningful activities and experiences that may be difficult to access in person.
Overall, assistive technologies can help people with dementia maintain their independence, autonomy, and dignity, while also promoting their social inclusion and participation in various life activities. However, it is important to consider the individual's needs and preferences when selecting assistive technology, and to ensure that they are supported in learning and using the technology effectively.
The scope and breadth of assistive technology
Assistive technology whilst needs to be tailored according to the persons individual needs and requirements. However it can be divided into several categories, including:
- Cognitive aids: These are devices or tools that support cognitive functioning and memory, such as electronic organizers, reminder systems, or digital calendars. They may also include assistive technologies that help with decision-making, problem-solving, or communication, such as speech recognition software or augmented reality tools.
- Environmental control systems: These are technologies that enable people with dementia to control their environment and surroundings, such as lighting, temperature, or security systems. They may include smart home systems, voice-activated devices, or motion sensors that can detect movement and adjust the environment accordingly.
- Safety and monitoring devices: These are technologies that help ensure the safety and well-being of people with dementia, such as GPS tracking devices, fall detection sensors, or emergency response systems. They may also include wearable technologies, such as smart watches or bracelets, that can monitor vital signs or detect changes in behavior.
- Communication and social engagement tools: These are technologies that support communication and social interaction, such as video conferencing tools, social media platforms, or virtual reality systems. They may also include assistive technologies that support social participation, such as group gaming or music therapy.
- Assistive devices for mobility and physical functioning: These are technologies that support mobility and physical functioning, such as mobility aids, prosthetics, or hearing aids. They may also include assistive technologies that support physical rehabilitation, such as exercise equipment or biofeedback systems.
Overall, the scope and breadth of assistive technology for people with dementia is constantly evolving, as new technologies are developed and adapted to meet the unique needs and challenges of this population. It is important to consider the individual's needs and preferences when selecting assistive technology, and to ensure that they are supported in learning and using the technology effectively.
Here are some examples of assistive technology that can be used to support individuals with various needs:
Life Domain | Assistive Technology |
---|---|
Self-care | Bath lifts, shower chairs, raised toilet seats, dressing aids, teachers, and Medication Reminders: Pill dispensers and medication reminders can help individuals with dementia remember to take their medication at the appropriate times. Bathing and grooming aids(shower chairs, grab bars): Devices such as bath and shower seats, grab bars, and handheld showerheads provide support and stability during bathing, reducing the risk of falls and making it easier for the person with dementia to perform self-care tasks. |
Continence and hygiene | Incontinence products, bedpans, commodes, catheters, bidets Incontinence pads and briefs: These products are designed to absorb and contain urine and/or fecal matter for individuals with incontinence issues. They can be worn discreetly under clothing and come in a variety of sizes and absorbency levels to meet individual needs. Catheters: Catheters are flexible tubes that are inserted into the bladder to drain urine. They are used by individuals who cannot urinate on their own due to a variety of conditions such as spinal cord injury, multiple sclerosis, or urinary retention |
Communication | Augmentative and alternative communication devices (AAC), speech recognition software, text-to-speech software, communication boards Visual aids: These include picture boards, picture books, or flashcards that help individuals with dementia communicate basic needs or wants by pointing to pictures or symbols. Electronic communication devices: These devices use visual or auditory cues to help individuals with dementia communicate. They can be programmed with phrases, pictures, or symbols that the individual can activate with the touch of a button. |
Mobility and transferring | Wheelchairs, mobility scooters, walkers, transfer boards, transfer benches Wheelchairs are a type of mobility assistive technology that provides people with limited mobility the ability to move around independently. There are different types of wheelchairs, including manual wheelchairs, electric-powered wheelchairs, and lightweight wheelchairs designed for easier transport. Transfer boards: Transfer boards are a type of transferring assistive technology that are used to help people with limited mobility transfer from one surface to another, such as from a bed to a wheelchair or from a wheelchair to a car. These boards are designed to be strong and durable, and may be made from materials like plastic or wood. |
Cognition and memory loss | Reminder apps, GPS tracking devices, medication dispensers, electronic organizers, smart home technology, memory aids GPS tracking devices: GPS tracking devices can be used to help individuals with cognitive impairments who may be prone to wandering or getting lost. These devices can be worn or carried by the user, and can be programmed to send alerts to caregivers or family members if the user leaves a designated area. Reminder apps: Reminder apps can be used to set reminders for daily tasks, medication schedules, and other important events. Some reminder apps offer visual cues, such as pictures or icons, to help individuals with cognitive impairments remember what they need to do. |
Vision and hearing | Screen readers, magnifiers, braille displays, hearing aids, cochlear implants, captioned telephones, FM systems1.Screen readers are software programs that read text on a computer screen aloud for individuals who are visually impaired. This allows individuals who are blind or have low vision to access information that would otherwise be inaccessible. Hearing aids are electronic devices that are designed to amplify sound for individuals with hearing impairments. They can help individuals hear sounds that they may have difficulty hearing otherwise, such as speech or music. This technology allows individuals with hearing impairments to communicate effectively in a wide range of situations, including conversations with family and friends, meetings, and public events. |
Daily living activities | Adaptive eating utensils, cooking aids, dressing aids, reachers, jar openers, button hooks1. Smart locks can be used to ensure that doors are locked and secure, preventing individuals with dementia from wandering or getting lost. Smart lights can be programmed to turn on automatically when an individual with dementia enters a room, providing better orientation and reducing confusion. This can be especially helpful for individuals with dementia who may have difficulty finding their way around their home. |
Recreation and leisure | Adaptive gaming controllers, adapted musical instruments, talking books, sensory toys, adaptive sports equipment. Digital photo frames: Digital photo frames can display a slideshow of family photos or favorite memories, which can help to stimulate memories and spark conversations. These frames can also be preloaded with music or videos that an individual with dementia enjoys. Adaptive gardening tools such as raised garden beds, wheeled planters: Gardening can be a very enjoyable activity for individuals with dementia, but it can be challenging due to physical limitations or mobility issues. These can make gardening more accessible and enjoyable for individuals with dementia. |
Education and employment | Text-to-speech software, speech recognition software, note-taking apps, ergonomic keyboards, adjustable desks and chairs Memory Aids: Memory aids can help individuals with dementia remember important information. Examples of memory aids include digital voice recorders, note-taking apps, and digital calendars. These tools can help individuals remember important dates, appointments, and to-do lists. Text-to-speech software: This technology can read text aloud, making it easier for individuals with dementia in education and employment . Software such as NaturalReader or ReadSpeaker can be used to convert text into speech. |
Home and other environments | Home automation systems, smart home technology, safety alarms, environmental control systems, door openers Home automation systems: These systems can help people with dementia with everyday activities such as turning lights on and off, adjusting the temperature, and opening and closing doors, all with voice commands or remote control. Telehealth technology: This includes video conferencing platforms that enable remote consultations with healthcare professionals, as well as wearable devices that can monitor vital signs and alert healthcare providers if there are any concerns. |
Eating and drinking | Adaptive eating utensils, feeding tubes, specialized cups and straws, spill-proof plates and bowls Picture menus on tablets/screens: Some individuals with dementia may have difficulty reading or understanding written menus. Picture menus can provide visual cues that make it easier to select and order food items. Talking reminders: These can be helpful in reminding individuals to eat or drink at regular intervals. Some talking reminder devices allow caregivers to record personalized messages or alarms that can be set to go off at specific times. |
Pressure area management | Pressure relief cushions, air mattresses, alternating pressure pads, pressure relief footwear. Lift and transfer devices: These devices can be used to help individuals with dementia move safely and comfortably from one location to another. Examples include patient lifts and transfer chairs. Bed sensors: These sensors can be placed under the mattress and can detect changes in pressure, movement, or position. Caregivers can be alerted if the individual has been in the same position for too long, allowing them to reposition the individual and reduce the risk of pressure ulcers |
Carer support | Transfer aids, lift chairs, patient lifts, wearable caregiver monitoring devices, respite care services. Fall detection devices: Fall detection devices can alert caregivers if an individual with dementia falls and needs assistance in a timely manner. Pressure mapping systems: These systems use sensors to monitor pressure points and provide real-time feedback to caregivers. The information can be used to adjust positioning or provide interventions to prevent pressure sores. |
Mental health conditions | Mood trackers, relaxation and meditation apps, stress-reducing gadgets, virtual reality therapy, sleep trackers |
It is important to note that the types of assistive technology needed will vary depending on the individual's specific needs and preferences. Additionally, it is important to ensure that the individual is involved in the selection and use of the technology to ensure it is meeting their needs and goals.
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