The Complexities of Dementia Caregiving

August 29, 2024

John-Paul Ashton is a caregiver to his father who lives with dementia.

As one of four grown adult children, watching the decline of my father struggling with dementia has been very difficult. Our mother has been registered as disabled for ten years, because she has mobility issues and diabetes. We have tried to support them by moving them closer to some of us — all my siblings now all live at least two hours’ drive in case of any emergencies.

It’s been physically demanding for our mum to act as carer for our dad, and she’s often needed assistance with daily activities such as bathing, dressing, and feeding him. When the carer is already dealing with their own disability, these tasks become even more strenuous, leading to a cycle of frustration and exhaustion.

Her diabetes further complicates things, as it requires careful management through diet, medication, and regular monitoring of blood sugar levels.

For our mum, maintaining her health is a juggling act. The physical exertion required to care for dad can exacerbate her disability, leading to increased pain and reduced mobility, and the stress and irregular schedules can lead  to fluctuations in her blood sugar levels and other complications.

The emotional impact of caring for a partner with dementia is profound. Watching a loved one slowly lose their memory, personality, and independence is heartbreaking, and mum has been in denial for many years about the impact it will have on their lives. She can feel isolated, as their social interactions become limited. This social isolation is a significant issue for carers of dementia patients. The nature of dementia often requires the carer to be present at all times, limiting their ability to engage in social activities. For our mum, this isolation is compounded by mobility issues and the need to manage her own health conditions. The loss of social interactions can lead to a sense of loneliness and abandonment.

Support networks are crucial in mitigating these effects, yet they are often inadequate or inaccessible for disabled carers. Family and friends may not fully understand the dual burden of caring for a partner with dementia while managing one’s own disability. Professional support services may also be limited, with barriers such as physical accessibility and financial constraints. The lack of adequate support can leave the carer feeling overwhelmed and isolated, further exacerbating the emotional and psychological toll of caregiving.

The psychological strain of caregiving is multifaceted. The constant need to be alert and responsive to the needs of a dementia patient can lead to cognitive overload. This is especially challenging for carers with disabilities, as their capacity to handle stress may already be compromised. The cognitive demands of managing medications, appointments, and the unpredictable behavior associated with dementia can often be overwhelming.

The psychological impact of caregiving can lead to a sense of loss of self as the carer’s identity becomes enmeshed with their role as a caregiver. As I’ve seen with mum, this loss of self can be particularly pronounced for disabled carers who already face limitations in their daily lives.

Financial strain can have another significant impact on carers of dementia patients as the cost of medications, medical appointments, and possibly home modifications, can be substantial. For our mum, additional costs related to her own health care and disability needs add to that financial burden.

Some years ago we put a power of attorney in place to help manage these issues. It was a difficult decision and caused some tensions in the family but  we did it for the long-term good. I have been managing paying all our parents bills for several years; I monitor dad’s emails to help him action anything he needs, and my eldest brother manages our parents’ pensions and income tax.

This has created a strong support network where they don’t have to worry about day-to-day finances. I would recommend putting in place a power of attorney and getting access to parents’ bank accounts so that you can manage their bills; there is a risk that people living with dementia worry that their money is being stolen, so I always work together with my brothers to document anything we do so that we can allay those fears if they ever surface.

Strategies for support and resilience

To mitigate the impact caregiving can have on disabled carers, a multi-faceted approach is necessary. This includes practical support, emotional and psychological assistance, and financial aid.

1. Practical Support: Providing respite care can give the carer a much-needed break, allowing her to rest and attend to her own health needs. Home health aides and community support services can assist with daily caregiving tasks, reducing the physical burden on the carer. If I take dad to play golf for four hours and leave mom alone, I notice how she is emotionally stronger afterward.
2. Emotional and Psychological Assistance: Counseling and support groups can provide emotional support and help carers cope with the stresses of caregiving. Peer support groups offer a sense of community and understanding, reducing feelings of isolation. Mom is very involved in her local church and has a very good support network around her.
3. Financial Aid: Government programs and non-profit organizations can offer financial assistance to help cover the costs of caregiving and medical expenses. This can alleviate some of the financial pressure and allow the carer to focus more on her well-being and that of her partner.
4. Education and Training: Providing carers with training in managing dementia and their own health conditions can empower them with the knowledge and skills needed to handle their dual roles effectively. This can reduce anxiety and improve their ability to provide care. This has been very difficult with mom as she has been in denial, so my brothers and I have educated ourselves to help us understand mom’s concerns and frustrations.

The impact of dementia on our mother is profound, encompassing physical, emotional, psychological, social, and financial challenges. And so addressing these challenges requires a holistic approach that includes practical support, emotional and psychological assistance, and financial aid.