Living Options for a Person with Dementia: Living with Family

Last month, we discussed the option of remaining in a person’s home once they’ve started experiencing cognitive decline. A close option to that is living with family members.

What is family care?
Living with family is another ‘easy’ decision to make, as there are limited choices for seniors suffering from cognitive decline who want to live with family. Most frequently, this refers to living with one’s children. Factors that may weigh on this decision are the relative location of children to the parent suffering from cognitive decline, whether family members can fit the senior in their home, suitability of the home for the seniors to live, and, of course, the quality of the family relationship. Another major consideration is whether the family will require additional support from a professional caregiver to support the senior. This could require even more space in the family home.

Benefits of care in a family member’s home

Familiar Environment
Caring for a senior with dementia in a family member’s home provides the comfort of a familiar setting, which can be crucial for someone with cognitive impairments. Familiar surroundings help reduce confusion and anxiety, making the senior feel more secure and stable. The presence of personal belongings and a known physical space can greatly contribute to a sense of continuity and comfort, which can help mitigate some of the distressing symptoms of dementia, such as agitation and disorientation. However, the senior can also be distressed by the fact that this home is familiar, but not the home that they know.

Personalized Care
Family members are more likely to understand the specific needs and preferences of their loved one. This intimate knowledge allows for highly personalized care that institutional caregivers might not be able to provide. Family caregivers can tailor daily activities, dietary preferences, and social interactions to align with the senior’s history and habits. This level of customization can result in more effective care and a more responsive caregiving environment, which can be particularly beneficial in managing the unpredictable nature of dementia symptoms. 

Home care, particularly from family members, can be more cost-effective than institutional care. While there are expenses associated with home modifications and additional care needs, it often remains cheaper than paying for full-time nursing home care. Additionally, some families may be eligible for financial assistance programs or tax benefits related to caregiving, further reducing the overall financial burden. This cost-effectiveness can make home care a viable option for many families, allowing them to allocate resources to other necessary aspects of the senior’s care and well-being.

Flexible Scheduling
Caring for a senior at home allows for more flexible scheduling. Family members can adjust their routines to provide care as needed, which can be more accommodating than the fixed schedules in care facilities. This flexibility can be crucial in responding to the unpredictable and changing needs of a senior with dementia. Family caregivers can adapt daily routines and care activities to align with the senior’s current state, ensuring that care is provided when it is most needed. This adaptability can lead to more effective care and a better quality of life for the senior, as their needs are met in a timely and responsive manner.

Family-Made Rules
In a family home, rules and routines are determined by the family members, not by a third party. This autonomy allows the family to create a caregiving environment that best suits their unique needs and preferences, ensuring that the senior’s care is managed in a way that aligns with their values and lifestyle. The ability to make decisions about daily routines, care strategies, and household management can provide a sense of control and empowerment for both the senior and the caregivers.

Unlike in many institutional settings, there are no restrictions on visitation times in a family home. Friends and family members can visit the senior at any time, fostering more frequent and meaningful interactions. This open-door policy can enhance the senior’s social life and emotional well-being, as they are able to maintain important relationships without the constraints of visiting hours.

Disadvantages of care in a family member’s home

Home Modifications
To ensure safety and accessibility for a senior with dementia, significant modifications to the home may be necessary. This can be costly and time-consuming, adding to the financial and logistical burden on the family. Necessary modifications may include installing grab bars, ramps, and specialized locks, as well as making changes to the layout of the home to reduce fall risks and enhance safety. These modifications require careful planning and investment, which can be challenging for families with limited resources. However, these changes are essential to create a safe and supportive environment for the senior and can significantly impact their ability to remain at home.

Emotional and Physical Strain
Caring for a senior with dementia is demanding and can lead to significant emotional and physical stress. Family caregivers often experience burnout, anxiety, and depression due to the continuous demands of caregiving. The emotional toll of witnessing the decline of a loved one, coupled with the physical demands of caregiving tasks, can be overwhelming. This strain can affect the caregiver’s health and well-being, potentially leading to a decreased ability to provide effective care. It is essential for family caregivers to recognize the signs of burnout and seek support, whether through respite care, support groups, or professional counseling.

Additionally, since dementia manifests itself differently in each individual, it is impossible to predict the impact that it may have on the senior’s personality. This could make them challenging or impossible to live with, increasing strain on the family. It is important to recognize that strains are not just placed on relationships between the caregivers and the senior, but can also impact relationships between the caregivers.

Having a senior with dementia in the home exposes children to the senior’s challenging behaviors and declining condition. This exposure can be distressing for children and may impact their emotional well-being. It can also create additional caregiving responsibilities for family members, as they must balance the needs of both the senior and the children, ensuring that the children understand and cope with the situation appropriately.

Lack of Professional Expertise
Family members, despite their best intentions, may lack the professional expertise required to manage dementia effectively. This can result in inadequate care, potentially worsening the senior’s condition. Professional caregivers are trained in specific techniques and strategies to handle the unique challenges of dementia care, such as managing behavioral issues, ensuring safety, and providing appropriate medical care. Without this expertise, family caregivers may struggle to address complex care needs. It is important for families to seek education and training on dementia care, or consider supplementing their efforts with professional caregiving services.

If the family hires a professional caregiver to assist with the senior’s care, it introduces a stranger into the household. This can be uncomfortable for both the family and the senior, as they adjust to the presence of an outsider in their private space. Building trust and establishing a positive relationship with the caregiver can take time and effort. Additionally, managing the professional caregiver becomes another task for the family to manage. If the caregiver is ill or unexpectedly absent, more burden is placed on the family.

Impact on Family’s Personal Life
The caregiving role can significantly impact the personal lives of family members. It often requires a substantial time commitment, limiting their ability to work, socialize, or pursue personal interests. The demands of caregiving can lead to isolation and a sense of loss of personal freedom. Children may not be able to have friends over without affecting the delicate home balance. This can affect the family’s mental health and overall quality of life. Balancing caregiving responsibilities with other aspects of life can be challenging, and it may require sacrifices and adjustments in personal goals and aspirations. It is crucial for caregivers to find a balance and ensure they take time for self-care and maintain their social connections and interests.

Additional Strains from Family Visitors
Taking the senior into the family home makes that the home of the senior. Family dynamics being what they are, this can result in the senior having other family members over as their guests paying them a visit, even though those guests might not normally be welcome in the caregiving family’s home. This can create tension and discomfort within the household, as family members navigate these social dynamics. The presence of visitors can disrupt the routine and privacy of the household, adding to the overall stress and complexity of caregiving.

Fights About Medication
Disagreements about medication management can arise, causing conflicts within the family. Ensuring that the senior takes their medication correctly and on time can be a source of stress, particularly if family members have different opinions on how to manage this aspect of care. Miscommunication or misunderstandings about medication regimens can lead to tension and arguments.

Difficulty of Moving Senior When Dementia Worsens
While family caregivers have the best of intentions when they accept responsibility for caring for their loved one, the real possibility exists that they may need to move the senior into an institution that can provide more comprehensive care at some time in the future. Unfortunately, that means that the difficulty of moving to an unfamiliar environment has not been avoided, it has just been delayed. However, the senior is likely in a worse position to deal with that change in their life than they were when they moved in with their family.

Every person is different. For many people, family care may be the best living option, but this is not an exhaustive list of all the benefits and disadvantages of family care. It is always important that each senior and their family consider what is most appropriate for them.