Making the right decisions about home care services for a loved one is a balancing act. How can you help a family friend with progressive ill-health to remain as independent as possible, when their condition (such as Alzheimer’s or other dementia) means they are getting increasingly forgetful and are on the verge of needing full-time care to keep them safe? This guide considers how to make home care decisions that allow someone to remain independent while also meeting their needs.
Understanding the Balance Between Independence and Support
Independence: Keeping as much independence as possible is an important way in which people feel a continued sense of worth and can enjoy their lives. This often means being able to continue to do things for yourself, make choices, and participate in social and recreational activities.
Image courtesy of Acorn Stock/ShutterstockWhat is support? According to our theory, a person’s need for support arises either when their ability to achieve their individualized goals is compromised, or when the everyday level of organizational control is reduced below that with which they are familiar. Thus, support can be delivered through three modes: physical support (ie, help with activities of daily living [ADLs]), emotional support, and behavioral (ie, initiative) support.
Key Considerations for Balancing Independence and Support
1. Assessing Needs and Abilities
A. Comprehensive Assessment
- Functional Abilities: Is the person able to complete routine activities, such as bathing, dressing, cooking, shopping, paying bills, or managing medication, independently or with some help?
- Cognitive and emotional state: Evaluate cognition (memory, attention, speed of processing, executive function) and emotional or behavioral state (e.g., as measured by the Geriatric Depression Scale or Ham-D), to plan how much support a person will require to be safe and thrive.
B. Involvement in Decision-Making
- Personal choices: Enlist the person in planning and making decisions about their care to the extent possible. Follow their personal preferences and wishes about their routine and level of care.
- Family input: Check if the decision is consistent with the values and wishes of the person’s family members who have prior knowledge about the person’s needs and preferences. Family members are often aware of previously expressed preferences of the individual.
2. Developing a Personalized Care Plan
A. Tailored Support
- Specially tailored Services: Draw up a care plan that offers help that fits around the person’s individual needs as closely as possible and still allows as much self-reliance as possible, perhaps doing certain things but doing others by yourself.
- Flexible approach: The care plan should be responsive to fluctuating needs, with regular reviews to guide and adjust the package of support.
B. Goal Setting
- Promote independence: Set goals that help the person maintain or even increase independence or ability to perform tasks or activities. This could include situations or assistance that would promote the person maintaining or increasing their independence (for example, at home or in the community).
- Safety and Well-Being: Establish goals for safety and well-being, including managing health issues, preventing falls, and providing emotional support.
3. Choosing the Right Type of Home Care
A. In-Home Personal Care
- Help with ADLs: Personal care can include assistance with bathing, dressing, grooming or other daily living tasks, according to the person’s functional status and level of independence.
- Companionship: accompanying and engaging in meaningful activities is supportive of emotional health, while also helping the other person feel a sense of normalcy and independence.
B. Home Health Care
- Medical Support: Individuals living at home may need assistance related to medical care, including taking or supervising medication, treating wounds, and even basic monitoring activities such as tracking blood pressure. Health-related morning checks and other oversight of medication of care plans. This is where a trained, licensed professional might be involved.
- Physical Rehabilitation: Physical, occupational, and other rehab services can improve or maintain functional capabilities and independence and support medical care in the community.
C. Respite Care
Respite care: When a family caregiver needs a break, they might consider respite care so that their care recipient has a chance to thrive in a temporary environment.
Implementing and Managing Home Care Services
1. Finding and Evaluating Care Providers
A. Research and Selection
- Caregivers: Verify that the caregivers are qualified to provide care for your family member with dementia or Alzheimer’s.
- Agency Reputation: Research home care agencies, read reviews, and ask others about their experiences before selecting a provider. By following these steps, your loved one can access professional care, but it will still come from a caregiver who shares personal interests, including hobbies, health and personal history elements, family background, and more. The best part is that these approaches reduce caregiver turnover, which means your loved one doesn’t have to undergo the repeated cycle of connecting with someone new and going through a period of adjustment.
B. Communication and Collaboration
- Good communication: Help the caregivers understand the goal of the care plan, and what the individual’s preferences and needs are.
- Regular Updates: Communicate with Intensive Care Unit attendants and nursing staff regularly over several days to monitor the progress and adjust the care plan as needed.
2. Monitoring and Adjusting the Care Plan
A. Regular Reassessments
- Regular reviews: try to reassess the needs of the individual regularly and monitor and modify the care plan according to these changing circumstances. This helps to continue to provide the right balance of independence and support.
- Third, Feedback Loop: Solicit feedback from the person and family members and caregivers about the extent to which the care plan is working (and/or isn’t working) and, when the plan is changed, what’s now working and what isn’t.
B. Adjustments and Adaptations
- Flexibility: Be prepared to adapt to alterations in the care plan if your loved one’s condition changes, such as where they can live or who is involved in caregiving. This might require providing more assistance, less assistance, or changing the services provided.
What are the common challenges faced by elderly individuals when making care decisions?
As people get older they might face all or some of the following challenges when having to make care decisions, which in turn can affect their capacity to decide where their interests lie in terms of their health and wellbeing. Those outlined below were some of the more common issues revealed by a search of page headlines and subheadings.
1. Low Health Literacy
Although seniors generally have lower health literacy than other age groups, such limitations profoundly impact a senior’s comprehension of health information, potentially worsening their ability to process and communicate information about their illness or condition. These considerations can significantly influence how well seniors can engage in making informed decisions about their care.
2. Cognitive Impairments
Cognitive impairment, which is common in old age, can also affect decisional capacity. For example, seniors with dementia or other such issues can struggle to consider options or remember details about their care.
3. Generational Attitudes
Some older adults become resigned to their situation, believing that ‘doctor knows best.’ Maybe they always have, and they trust the doctor to advise them on all the details – or perhaps, for various reasons, they simply lack confidence in their ability to know the right answers. Then there is straight-out anxiety: they might be fearful that, if the choice is up to me, I will become so worried that I can never make a good choice.
4. Emotional Factors
Similar to other ethnic/minority populations, anxiety and fear about outcomes make many seniors feel overwhelmed triggering avoidance of decisionmaking, or our tendency to let cast caregivers or family members make decisions for us, adding another layer of emotions to the decision at hand.
5. Complex Health Conditions
Despite a range of supplements, diet manipulation, and consultation with traditional Chinese practitioners, the father declined until dementia became more advanced The prevalence of multiple chronic conditions among seniors means that care decisions are typically occurring within the backdrop of decisional conflict. The confounding effect of considerable treatment options for multiple health problems is likely to be more pronounced in this scenario.
6. Financial Constraints
For seniors, the anxiety over the financial aspects of care decisions looms large. The cost of care, often affected by the need for more or special medications, treating an injury or illness, and modifications to their homes adds to their worries, which may influence their decisions regarding care needs. Couple this anxiety with retirement savings that might be inadequate to cover the cost of even assisted living or nursing home care, many seniors need to carefully weigh the cost and quality benefit of their care decisions and often find themselves in compromises.
7. Trust and Relationship Dynamics
A good relationship based on trust between the person who has become old and their child-care workers or healthcare providers is necessary for mutual understanding. Negative stereotypes and a lack of understanding of the real person’s situation can hinder this relationship, such that the person who has become old may be more likely to hold back discussing their concrete preferences and needs.
8. Social and Cultural Influences
Even cultural perceptions of aging and norms around being old in society can play a role in decision-making. What if seniors feel unduly pressured to accept what is seen as normative care when they wish to assert independence and autonomy?
In providing home care, including to those with Alzheimer’s, it is important to strike the right balance between independence and support. This is an art form that requires sensitive decision-making and planning, including needs assessment, development of a meaningful care plan, selection of meaningful services, monitoring, and periodic adjustment of care. With this, home and aged-care services can empower persons with Alzheimer’s to live in their homes for as long as possible, or as long as they desire, with the appropriate amount of support.
Good home care, in other words, honors their intended activity and direction, respects their goals and desired quality of life, and enables them in ways that enrich their humanity. With careful planning and frequent communication, it is more than manageable to achieve this balance between autonomy and safety, enabling those with Alzheimer’s to live comfortably and with dignity in their own homes.
