Residential Aged Care News & Stories

detail-type-4 The Dementia Journey: A Family’s Perspective detail-type-4

22 March 2023

Dementia is a complex disease that affects not only the person diagnosed but also their family members. The journey of dementia is challenging, filled with uncertainties, and can cause a range of emotions for the entire family. In this article, we will discuss the complexities of the dementia journey from a family perspective, exploring how family members can ensure their loved one’s safety, make difficult decisions, manage uncertainty, and forgiveness.

Ensuring Safety
When a loved one is diagnosed with dementia, one of the first concerns for family members is their safety. Dementia impacts a person’s cognitive abilities, making it challenging for them to remember things, make decisions, and communicate effectively. This can lead to confusion, disorientation, and potentially dangerous situations. Therefore, families must take steps to ensure their loved one’s safety, both physically and emotionally.

Physical safety measures can include installing safety locks, removing potential hazards, and providing supervision. However, emotional safety is equally important as dementia can cause a person to become agitated, angry, or frightened, leading to outbursts that can be upsetting for both the person with dementia and their family members. Family members must be patient and understanding, providing emotional support and reassurance to their loved one, and identifying potential triggers for emotional outbursts, such as loud noises or unfamiliar surroundings.

Home versus a Care Facility
One of the most significant decisions families face when a loved one is diagnosed with dementia is whether to provide care at home or move them to a care facility. This decision is not easy and requires careful consideration of the person’s needs, the family’s capabilities, and the available resources.

Providing care at home can be challenging but also rewarding. It allows the person with dementia to remain in a familiar environment, surrounded by loved ones. However, it can be emotionally and physically taxing on the family members providing care, who may have to give up their careers or social lives to provide round-the-clock assistance . Additionally, caring for a person with dementia requires specialised knowledge and skills, and families may need to seek support from healthcare professionals.

On the other hand, moving a loved one to a care facility can provide specialised care and support but can also be emotionally difficult. Families may feel guilty for not being able to provide care at home and worry about their loved one’s wellbeing. However, care facilities that specialise in dementia care can provide a safe and supportive environment, with trained staff who are experienced in managing the challenges of the disease. Families can feel secure that their loved ones are in good hands and continue to be an important part of their lives.

Managing Uncertainty
Another significant challenge for families is the uncertainty of the future. Dementia is a progressive disease, and the symptoms will worsen over time. Families worry about the impact on their loved one’s quality of life and how they will manage as their needs become more complex. They also struggle with feelings of grief and loss as they watch their loved ones experience cognitive decline.

Access to support services is critical for families navigating the dementia journey. Counselling, support groups, and education programs can provide a range of resources and strategies to help families manage the emotional challenges of the disease. They can also provide a safe and confidential space to discuss concerns and emotions. Support groups can connect families with others who are going through a similar experience and provide a sense of community and support. Education programs can help families understand the disease and its progression and provide practical strategies for managing difficult behaviours.

One of the most challenging aspects of the dementia journey is dealing with the changes in a loved one’s personality and behaviour. Dementia can cause a person to become forgetful, confused, and irritable, leading to strained relationships and hurt feelings. Family members may struggle with feelings of resentment or anger, which can make it challenging to provide care and support.

Forgiveness is an essential aspect of the dementia journey, as it allows families to move forward and maintain healthy relationships. It is crucial to understand that the changes in a loved one’s behaviour are not intentional and are a result of the disease. Families must be patient and understanding, forgiving the person with dementia for any hurtful behaviour. At the same time, they must also be forgiving of themselves, acknowledging that caring for a person with dementia is challenging and that mistakes will inevitably be made.

Additionally, families may also face financial challenges. The costs of specialised care, medications, and other related expenses can quickly add up and become a significant burden on families. Financial planning and assistance may be necessary to help families navigate these challenges and ensure that their loved ones receive the care they need.

Another important aspect of the dementia journey is maintaining a sense of normality and routine in the person’s life. While their cognitive abilities may decline, it is crucial to continue engaging in activities that they enjoy, spending time with loved ones, and maintaining social connections. This can provide a sense of purpose and identity, which can be empowering and boost their mood and overall wellbeing.

It is also essential for families to take care of their own physical and emotional wellbeing. Caring for a loved one with dementia can be emotionally and physically taxing, and family members may neglect their own health and wellbeing in the process. It is essential to take breaks, seek support from others, and engage in self-care activities, such as exercise and meditation.

The dementia journey is a challenging and emotional one for families. It requires careful consideration of safety measures, home versus a care facility, managing uncertainty, and forgiveness. It is essential for families to seek support from healthcare professionals, support groups, and other resources to help navigate the challenges of the disease. At the same time, it is crucial to maintain a sense of routine in the person’s life and take care of their own wellbeing. With the right support and resources, families can successfully navigate the dementia journey and provide their loved ones with the care and support they need.