CONTEXT

Parkinson’s is a shared disease

Parkinson’s Disease (PD) is a progressive neurological disorder that affects all aspects of daily life, causing symptoms like tremors, stiffness, difficulty with coordination, and cognitive changes.

PD affects not just the person with Parkinson’s (PwP), but also their close family and support network. Caring has a significant impact on health and wellbeing and is often overlooked in the general PD healthcare experience.

CHALLENGES

Navigating complex support systems

OUTCOMES

The support system for Parkinson's involves multiple healthcare providers, including neurologists, PD nurses, therapists, and general practitioners. Coordinating care among these professionals can be overwhelming, leading to gaps in care and communication.

Carers and PwP often struggle to find and access the appropriate resources, such as support groups, financial aid, and educational materials. This complexity can hinder their ability to manage the disease effectively and maintain their quality of life.

“It feels like our lives are consumed by Parkinson’s.”

Parkinson’s creates implications that are shared by the couple, which have a significant impact on the dynamics of the relationship. We need more recognition of carer’s roles, and support for their symptoms and challenges, particularly at earlier stages of the disease.

Physical & Health Implications

"I need surgery but how do I have surgery? I’ve told the neurosurgeon that I can’t have surgery because what am I supposed to do with myself."

Sleep deprivation and physical exhaustion
Neglecting own health needs due to caregiving responsibilities
Increased physical demands of caregiving tasks

NEGATIVES

Communication challenges result in misunderstandings, frustration, and arguments.
Guilt and worry for the future, and if they’re doing the right think right now.
Isolation and loneliness leading to emotional and social disconnection for both partners.
Loss of independence leads to reduced autonomy and feelings of helplessness.

OPPORTUNITIES

SOLUTION

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Providing tailored plans and progressively disclosing information.

Relationship & Role Changes

"I don’t want to be a carer, it was profoundly difficult to be referred to... there’s an expectation, you’re the wife, you’re the carer."

Transition from partner to caregiver
Changes in relationship roles and expectations
Dealing with anticipatory grief

Delivering short useful videos by specialists.

Suggesting shared activities to promote social engagement.

Empowering couples to navigate new challenges together

Credit: Safi Alia Shabaik

A SHARED JOURNEY

POSITIVES

Facing challenges together can deepen their bond and foster resilience as partners navigate PD.
A new perspective on life can help partners appreciate the present and everyday experiences.
New experiences can enrich the relationship and create lasting memories.
A strong Parkinson’s community already exists, and can provide essential emotional support.

Limited support increases carer stress now. Proactive resources are needed so carers can build resilience and manage caregiving better.
Isolation impacts couples as roles shift. Shared tools can help couples face Parkinson’s together, reducing isolation and strengthening bonds.
Lack of community resources leaves carers unsupported. Integrating community insights can boost carers’ emotional strength and connectedness.
Overload burdens new carers. Progressive information allows carers to learn at their pace, empowering them in their role.
Digital-only formats exclude some users. Multi-format resources ensure carers of all abilities can access support