Case Study: Pam, a 75-Year-Old Woman with Dementia

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Case Study: Pam, a 75-Year-Old Woman with Dementia

Background

Pam is a 75-year-old woman living in a small rural community. She was diagnosed with dementia two years ago. Pam has always been active in her community, attending church, participating in social clubs, and volunteering at the local library. However, as her dementia has progressed, she has faced several challenges that affect her daily life and social interactions.

Social Aspects and Examples

Social Inclusion

Example: Pams community has a weekly social club meeting that she used to attend regularly but as her dementia progressed, she started to withdraw due to fear of embarrassment and difficulty keeping up with conversations.

Connection: The community could implement a dementia-friendly program, where activities are tailored to individuals with cognitive impairments, encouraging Pam to continue participating without fear of judgment. By educating club members about dementia, the community can foster a more inclusive environment.

Person-Centred Approach

Example: Pam has always loved gardening but due to her ability to remember the necessary steps and follow through has diminished and her caregivers initially took over the gardening tasks, thinking it would be easier for her which made Pam sad.

Connection: By adopting a person-centred approach, her caregivers can create a simplified gardening routine that allows Pam to continue participating in an activity she loves where she can focus on her strengths and preferences can improve her quality of life.

Support Systems

Example: Pam's family feels overwhelmed by her care needs and unsure how to support her autonomy while ensuring her safety. They often make decisions for her without consulting her, thinking it's in her best interest.

Connection: Providing training for Pam's family and caregivers on how to support her decision-making can empower them to involve her in the process. Peer support groups for families of individuals with dementia can also offer shared experiences and strategies. ( Nay, R., Bauer, M., Fetherstonhaugh, D., Moyle, W., Tarzia, L., & McAuliffe, L. (2015).

Technological Solutions

Example: Pam often forgets to take her medication, which worries her family. They have considered hiring a full-time caregiver but are concerned about the cost.

Connection: Implementing assistive technologies, such as a medication reminder system, can help Pam manage her medication independently and GPS trackers can also ensure her safety while allowing her some freedom to move around her home and garden.

Mainstream Societys Perception vs. Lived Experiences

Mainstream Societys Perception

Stigma and Misunderstanding: Many people in Pams community might see dementia as a condition that renders individuals completely incapable of making decisions or participating in meaningful activities. This perception can lead to social exclusion and a lack of opportunities for people like Pam to engage in their communities.

Overprotection: Society often perceives people with dementia as needing constant supervision and care, which can lead to overprotection and a loss of autonomy for the individuals affected.

Lived Experiences of Different Communities

Community Support: In some cultures, there is a strong emphasis on family and community support, which can provide a robust network for individuals with dementia. However, this can also lead to challenges if family members are not equipped to handle the care needs effectively.

Resource Availability: Urban communities might have more resources, such as specialized dementia care centres and support groups, whereas rural communities like Pam's might have limited access, affected the quality of care and supported available.

Viewing Pams Condition as a Social Construct

Pams experience with dementia is shaped not only by her medical condition but also by the social environment and cultural context in which she lives. Mainstream societys perceptions and the availability of community support play crucial roles in how she manages her daily life. By addressing the social aspects and leveraging alternative perspectives, Pams community can create a more supportive environment that promotes her self-determination and enhances her quality of life.

Summary of Connections

Inclusion Programs: Tailored activities at the social club ensure Pam remains engaged.

Person-Centred Care: Simplified gardening routines maintain her interest in gardening.

Support Training: Family training empowers them to support Pams decision-making.

Assistive Technology: Medication reminders and GPS trackers enhance her independence and safety.

This approach not only addresses the immediate challenges Pam faces but also transforms the communitys perception and support structures to better accommodate individuals with dementia, ultimately fostering a more inclusive and empowering environment

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People with dementia can encounter numerous challenges in their daily lives. Here are some key ones:( James, I. A., & Jackman, L. (2017).

Memory loss:

Forgetting recent events or conversations.

Difficulty remembering names and faces.

Misplacing items frequently.

Communication difficulties:

Struggling to find the right words.

Trouble understanding spoken or written language.

Repeating themselves in conversations.

Cognitive impairments:

Difficulty with problem-solving and planning.

Inability to follow complex instructions.

Poor judgment and decision-making skills.

Orientation issues:

Getting lost in familiar places.

Confusion about time, such as the date or season.

Uncertainty about where they are or how they got there.

Emotional and behavioural changes:

Increased irritability or agitation.

Anxiety and depression.

Changes in personality and mood swings.

Physical challenges:

Difficulty with coordination and motor functions.

Problems with balance, leading to falls.

Decline in ability to perform everyday tasks, like dressing or eating.

Social withdrawal:

Avoiding social interactions due to embarrassment or frustration.

Feeling isolated or lonely.

Reduced interest in previously enjoyed activities.

Sleep disturbances:

Difficulty falling or staying asleep.

Day-night reversal, where they stay awake at night and sleep during the day.

Restlessness and wandering during the night.

Safety concerns:

Forgetting to turn off appliances, creating fire hazards.

Difficulty navigating stairs or other obstacles.

Risk of wandering away and getting lost.

Healthcare management:

Trouble managing medications and appointments.

Difficulty understanding medical instructions.

Increased dependence on caregivers for health-related decisions.

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Role of Self-Determination

Self-determination involves the ability of individuals to make their own choices and control their lives. For people with chronic illnesses or disabilities, such as dementia, self-determination is crucial for maintaining dignity, autonomy, and quality of life. It allows individuals to have a say in their treatment, care, and daily activities, which can lead to better health outcomes and greater satisfaction. ( Ethikrat, D. (2013).

Situations Where Self-Determination Can Play a Role

Care Planning and Management:

Involvement in Decisions: People with dementia can be included in discussions about their care plans. This can include decisions about medication, therapy, and living arrangements. (James, I. A., & Jackman, L. (2017).

Advanced Directives: Allowing individuals to set out their preferences for future care while they are still able to make decisions can ensure their wishes are respected later.

Daily Activities:

Choice of Activities: Providing options for daily activities, such as meals, clothing, and leisure activities, allows individuals to maintain a sense of control over their lives.

Flexible Routines: Adapt routines to accommodate the preferences and current abilities of the individual, enhancing their comfort and engagement.

Health Decisions:

Informed Consent: Ensuring that individuals understand the benefits and risks of treatments or interventions and can make informed choices.

Personal Health Goals: Supporting the individual in setting and pursuing their own health goals, which can motivate adherence to treatment plans.

Social Interactions:

Choosing Companions: Allowing individuals to choose their social interactions and companions can help maintain their social connections and emotional well-being.

Engaging in Preferred Activities: Facilitating participation in social activities that they enjoy can help prevent isolation and depression.

Social Aspects and Alternative Perspectives

Social Inclusion:

Community Programs: Develop community programs that are inclusive and adaptable to different levels of ability, ensuring people with dementia can participate meaningfully.

Public Awareness: Educate the public about dementia to reduce stigma and promote understanding and acceptance.

Person-Cantered Approach:

Strengths-Based Care: Focus on the individuals abilities and strengths rather than their limitations. This can shift the perspective from what they cannot do to what they can still enjoy and achieve.( Steeman, E., Godderis, J., Grypdonck, M., De Bal, N., & De Casterl, B. D. (2007).

Customized Support: Tailor support and interventions to the individual's preferences and needs, making care more relevant and effective.

Support Systems:

Training for Caregivers: Equip families and professional caregivers with the skills to support self-determination, including communication techniques and decision-making support.

Peer Support: Create opportunities for individuals with dementia and their families to connect with others in similar situations, providing mutual support and shared experiences.

Technological Solutions:

Assistive Technologies: Use technology to support independence and safety, such as reminder systems, GPS trackers, and communication aids.

Telehealth: Leverage telehealth services to provide flexible, accessible healthcare options that can be tailored to the individuals needs.

Opportunities to Use Self-Determination as Solutions

Enhanced Communication Tools:

Visual Aids and Simplified Language: Provide tools that help individuals with dementia express their preferences and make choices.

Alternative Communication Devices: Use devices that facilitate communication, such as tablets with communication apps.

Flexible Care Models:

Adaptive Home Care Services: Offer home care services that adapt to the individual's changing needs and preferences, allowing for variations in daily schedules.

Respite Care Options: Provide flexible respite care options for caregivers, giving them a break while ensuring the person with dementia continues to receive personalized care.

Advocacy and Policy:

Legal Protections: Advocate for laws and policies that protect the rights of individuals with dementia to make their own decisions.

Funding for Self-Determination Programs: Secure funding for programs that promote self-determination, such as supported decision-making services and advanced care planning initiatives.

By promoting self-determination, individuals with chronic illnesses or disabilities can maintain a higher quality of life and greater satisfaction with their care. Alternative perspectives and innovative solutions can help integrate self-determination into their care, addressing the challenges they face more effectively

References

Nay, R., Bauer, M., Fetherstonhaugh, D., Moyle, W., Tarzia, L., & McAuliffe, L. (2015). Social participation and family carers of people living with dementia in A ustralia.Health & Social Care in the Community,23(5), 550-558.

Steeman, E., Godderis, J., Grypdonck, M., De Bal, N., & De Casterl, B. D. (2007). Living with dementia from the perspective of older people: is it a positive story?.Aging & mental health,11(2), 119-130.

James, I. A., & Jackman, L. (2017).Understanding behaviour in dementia that challenges: A guide to assessment and treatment. Jessica Kingsley Publishers.

Steeman, E., Godderis, J., Grypdonck, M., De Bal, N., & De Casterl, B. D. (2007). The Challenge of Dementia.Person centered psychiatry, 309.

Van Der Roest, H. G., Meiland, F. J., Maroccini, R., Comijs, H. C., Jonker, C., & Dres, R. M. (2007). Subjective needs of people with dementia: a review of the literature.International psychogeriatrics,19(3), 559-592.

Deci, E. L., & Ryan, R. M. (Eds.). (2004).Handbook of self-determination research. University Rochester Press.

Wehmeyer, M. L., & Powers, L. E. (2007). Self-determination.Exceptionality,15(1), 1-2.

Ethikrat, D. (2013). Dementia and self-determination.

Sabat, S. R. (2010). Maintaining the self in dementia.Supportive care for the person with dementia, 227-34.