How Can You Cope When Your Partner Develops Dementia Alone?

This article explores the challenges faced by families dealing with dementia diagnoses, highlighting the inadequate support provided to caregivers and patients alike. The recent experience of Moira Owens, whose husband was diagnosed with vascular dementia, underscores the urgent need for improved systems of care and support in Wales.

Last updated: 14 October 2023 (BST)

Understanding the Impact of Dementia Diagnoses

Dementia is a complex and often misunderstood condition that affects millions of people worldwide. It encompasses various types, including Alzheimer's disease and vascular dementia, each presenting unique challenges. An early diagnosis can often leave families feeling overwhelmed and unprepared, as highlighted by the case of Idwal Owens and his wife, Moira.

• One in five dementia patients in the UK reportedly receive no support post-diagnosis.
• Less than a third of patients find dementia care easy to access.
• Stigma surrounding dementia contributes to feelings of shame among patients.
• The Welsh government is working on a new dementia action plan, aiming to enhance support and resources.
• Emerging research focuses on both immediate support and future treatments for dementia.

The Experience of Moira Owens

Moira Owens expressed her shock and dismay following her husband Idwal's diagnosis of vascular dementia six years ago. In her words, she was "dumbfounded" when the consultant simply stated, "oh yes, your husband's got vascular dementia," without any follow-up support or guidance. Instead of a comprehensive care plan, she was handed "a wad of leaflets" and left to navigate this challenging journey alone.

This experience is not unique; many families report similar feelings of abandonment after a dementia diagnosis. The lack of immediate support and guidance can leave caregivers feeling isolated and overwhelmed at a time when they need assistance the most.

The System's Failures

The Alzheimer's Society has been vocal about the shortcomings in support systems for dementia patients and their families. Recent research conducted by the organisation revealed alarming statistics that shed light on the current state of dementia care:

• Out of nearly 3,500 individuals surveyed, one in five reported receiving no support after their diagnosis.
• Only 29% of respondents found dementia-related care easy to access, indicating significant barriers in the system.
• Two out of five dementia patients expressed feelings of shame and stigma associated with their condition.

Gemma Roberts, a representative from the Alzheimer's Society, stated, "There are many people that are really being let down by the system." She emphasised the need for investment in programmes that help individuals live well within their homes for as long as possible.

The Need for a New Action Plan

The Welsh government has acknowledged the pressing need for reform in dementia care by committing to developing a new dementia action plan. The last plan expired three years ago, leaving a gap in structured support for both patients and caregivers. The government plans to consult with individuals affected by dementia and their families to inform this new plan, aiming to draw on their real-life experiences to shape better care strategies.

This initiative is crucial, especially given the significant health and social care implications of dementia. The condition not only affects those diagnosed but also has a profound impact on their families, friends, and caregivers.

Emerging Research and Future Directions

Recent advancements in medical research, such as a new blood test for Alzheimer's disease, have opened discussions about the future of dementia diagnosis and treatment. While these developments are promising, some experts have raised concerns that funding is disproportionately directed towards finding cures rather than providing immediate support for those currently living with dementia.

Dr Gary Christopher from Swansea University highlighted the importance of addressing the needs of current dementia patients, stating, "A lot of the money is about future cases of dementia, but we need to help people now." This sentiment resonates with many caregivers who feel that the focus should be on improving the quality of life for those already affected by the condition.

What Happens Next?

As the Welsh government prepares to consult on the new dementia action plan, the urgency for reform remains palpable. The voices of families like Moira and Idwal Owens must be central to this conversation, ensuring that their experiences inform the policies that will shape the future of dementia care in Wales.

Support services must evolve to address the immediate needs of patients and caregivers, reducing isolation and stigma while promoting understanding and accessibility to care. The upcoming consultation offers a crucial opportunity to reshape the landscape of dementia support in Wales and potentially serve as a model for other regions facing similar challenges.

Conclusion

The narrative of Moira Owens is a stark reminder of the shortcomings in dementia care systems. As families grapple with the complexities of dementia, the call for improved support and resources has never been more pressing. With a renewed commitment from the Welsh government to develop a new action plan, there is hope for a future where families no longer feel abandoned after a diagnosis.

What can we do as a society to ensure that dementia patients receive the care and support they need? As we await the implementation of new policies, it is vital to continue advocating for meaningful change. #DementiaCare #SupportForCaregivers #AlzheimersAwareness

FAQs

What is vascular dementia?

Vascular dementia is a type of dementia caused by reduced blood flow to the brain, often as a result of strokes or other conditions affecting the blood vessels. It can lead to cognitive decline and difficulties with memory, reasoning, and problem-solving.

What support is available for dementia caregivers?

Support for dementia caregivers can include access to local support groups, counselling services, educational resources, and respite care. Many organisations, such as the Alzheimer's Society, offer information and assistance tailored to the needs of caregivers.

How can I help someone with dementia?

Supporting someone with dementia involves being patient, providing emotional support, and helping them maintain their independence as much as possible. Engaging them in familiar activities and ensuring a safe environment can also be beneficial.

What are the symptoms of dementia?

Common symptoms of dementia include memory loss, difficulty with communication, impaired reasoning or judgement, changes in mood or behaviour, and challenges with daily tasks. Symptoms can vary based on the type of dementia and the individual.

How does stigma affect dementia patients?

Stigma surrounding dementia can lead to feelings of shame and isolation for patients, making it harder for them to seek help and support. This stigma can also affect caregivers, who may feel judged or misunderstood in their role.