Partnering in Care: A New Paradigm in Neurodegenerative Disease

November is National Family Caregiver and Care Partner Month

When we hear the word caregiver, we often picture someone stepping in to do for a loved one. In the world of neurodegenerative diseases — such as Parkinson’s disease, Alzheimer’s disease, or other progressive conditions — that imagery is entirely understandable. But it’s exactly that model which is beginning to shift, in subtle yet powerful ways. The term care partner is gaining traction, and with it a new mindset.

What does “caregiver” mean?

Historically, the term caregiver refers to a person — often a spouse, adult child, family member or friend — who aids someone who cannot fully care for themselves. They may help with activities of daily living (e.g., bathing, dressing, eating), supervise safety, manage medications, communicate with the health-care system, and coordinate services.

In neurodegenerative settings, these tasks can become more complex, as changes in motor function, cognition, mood, mobility, and medication management all converge.
But there’s a limitation to the “caregiver” label: it can imply a one-way dynamic. The caregiver gives; the recipient receives. It suggests a passive role for the person living with disease. It frames assistance in service-orientation rather than collaboration.

What does “care partner” mean?

Enter the concept of care partner. As one article puts it, quoting dementia care expert Teepa Snow:

“Simply said, because a caregiver gives care, while a care partner partners in care.”  

The emphasis is on partnership: the person living with the disease remains an active participant in their journey; the partner walks alongside, supports, collaborates. The focus becomes dignity, autonomy, shared decision-making, and maintaining as much independence as possible.

In neurodegenerative disease contexts, this means the care partner doesn’t just do everything to the person but does things with the person — adapting as disease progresses, shifting roles as needed. A meta-review points out the “self-reported needs of care partners supporting people living with neurodegenerative disorders” emphasise this relational stance.  

Why the distinction matters — especially in neurodegenerative diseases

Here are some of the key reasons why adopting the “care partner” mindset can make a meaningful difference.

1. Autonomy, dignity & identity

In progressive conditions, the person living with disease is gradually losing function—mobility, cognition, ability. Preserving their sense of self, their autonomy, their dignity becomes crucial.

In a caregiver model, the person may gradually become more passive, an observer of their own life.

In a care partner model, they continue to participate you might support the movement, but they still initiate, choose, engage.

For example: instead of “I feed you”, a partner may provide “hand-under-hand” support, so the person still participates.

This matters deeply for identity: the person is not solely defined by their disease, nor reduced to a recipient of care.

2. Shared decision-making & stronger relationships

Neurodegenerative diseases evolve. Medications change; therapy options shift; lifestyle adaptations become necessary; advance planning becomes part of the journey.
If the role is just “caregiver”, decisions may be made for the person. In contrast, a “care partner” invites the person into the conversation: “What do you want? How do you feel? What matters to you now?”

The dynamic becomes less helper-recipient and more team, which can strengthen relationship, build trust, align values — and reduce isolation for both parties.

3. Adaptability over time

With neurodegenerative diseases, the nature of support changes. Early stage: the emphasis may be on enabling independence. Mid stage: more assistance with daily tasks, more supervision. Late stage: more direct care, more safety focus, maybe institutional transitions.

A care partner mindset recognises that evolution and adjusts roles accordingly. Research on care partners of Alzheimer’s (and related disorders) shows that burden shifts depending on disease stage and required tasks.  

So, taking on the partner role means anticipating change, encouraging what the person can still do, identifying when you will do more — and when you might seek more support.

4. Supporter’s wellbeing

The person supporting a loved one is at risk of stress, burnout, physical strain, isolation.

If someone sees themselves purely as a “caregiver” who must do everything, they may neglect their own needs, may not engage other supports, may feel trapped in a service-role.

If framed as a “care partner”, one is more likely to recognise the importance of the partner’s wellbeing: collaboration, shared duties, pooling supports, recognising self-care. Studies show significant burden for care partners — for example one found U.S. care partners of Alzheimer’s disease recipients provided a mean 58.1 ± 53.0 hours/week, with strain increasing with disease severity.  

Thus, the language matters because it influences role, mindset, support system.

5. Quality of care and outcomes

There’s growing evidence that when the person living with the disease remains engaged, when the role is more collaborative, the outcomes may improve better participation, higher satisfaction, possibly slower functional decline.

In neurodegenerative disease research, for instance, informal care partners are recognised as essential to intervention/trial design and outcome benefit.

So the shift from caregiver → care partner is not just semantics; it reflects a more effective way of supporting care in a complex, evolving disease environment.

How this applies in the Parkinson’s / neurodegenerative disease context

• In PD, tasks often include motor support (walking, transfers, balance), cognitive/mood support (executive dysfunction, depression), medication timing, communication with clinicians, adapting lifestyle, safety assessments.

• Framing the role as care partner emphasises that the person with PD is — for as long as possible — actively part of their life decisions, routines, strategies — not just a passive recipient.

For example: instead of “I’ll decide when you walk”, the partner might say, “Let’s review together when and how you walk safely, and I’ll support you.”

• It enables the supporter to consider their own wellbeing, to seek collaboration (family, friends, community, peer organisations), and to anticipate the shifting nature of disease and role. It avoids the trap of “me doing everything” and instead invites “us working together, adapting as needed”.

• In advocacy, research, policy: when we talk about care partners in neurodegenerative disease, we recognise the essential role they play — and we emphasise the supports they need (training, respite, involvement in decision-making, recognition). This can influence funding, program design, caregiver/care-partner education.

• Language matters: using “care partner” supports dignity of the person living with disease; it shifts the culture of care away from dependence to collaboration; it helps reduce stigma and invites inclusion.

Final thoughts

The shift from “caregiver” to “care partner” is more than just a terminological change. It’s a mindset change. In the world of neurodegenerative disease — where progression, complexity, identity, autonomy and long-term support converge — how we name the role matters.

For the person living with the disease: they remain an active participant, a collaborator in their life and care.
For the person supporting: you become part of a team, recognising your own needs, adapting over time, working with your loved one rather than simply doing for.
For the system: recognising care partners means designing supports, policies, research frameworks that honour that relational, evolving role.

If I were to leave you with one takeaway: Language shapes reality. When we say care partner instead of caregiver, we open the door to dignity, collaboration, adaptability — a partnership in care, not just an assistance model.