A Future Worth Imagining: Reframing Hope in the Context of Dementia

With thanks to our Accredited Registrant member, Jurgen Schwarz for this article.

Hope occupies a distinctive role in therapeutic practice. It is frequently linked to the chance of change: distress may diminish, relationships may improve, longstanding patterns may be reinterpreted, or an individual may move toward a more manageable life.

Dementia introdudes complexity to this conceptualisation regarding hope.

Currently, most forms of dementia are incurable. Individuals do not recover as they might from depression, injury, or other illnesses. Cognitive and functional abilities typically decline. Language may become impaired, independence may decrease, and relationships are likely to change. Ultimately, they may need substantial support with daily living.

If hope is dependent on recovery, dementia seems to offer limited opportunities for its presence.

However, through my clinical experience with people affected by dementia, I have come to understand hope in a broader way. The therapeutic aim is not to shield people from the realities of dementia or to encourage unrealistic optimism. Rather, it is to help them discover forms of hope that can coexist with decline: hope for meaningful relationships, moments of connection, continued involvement in decisions, and a life that can still contain purpose and value despite increasing limitations.

Prevailing cultural stories about illness often follow a predictable trajectory: an adverse event occurs, treatment is administered, and improvement is anticipated. Even when complete recovery is unattainable, people typically expect progress, such as increased mobility, symptom reduction, or improved functioning.

Dementia breaks this conventional narrative.

A diagnosis of dementia often brings the realisation that certain losses are likely permanent and that additional losses may ensue. For the individual diagnosed, this awareness can prompt significant existential questions: Who will I become? What will occur when I can no longer take part in activities that define my identity? Will I continue to be recognised as myself?

For family members, these questions can be equally distressing: How much time remains? How will our relationship evolve? Will moments of mutual recognition persist?

Therapists may understandably feel compelled to give reassurance, highlighting remaining possibilities or encouraging clients to avoid excessive anticipation of future challenges. However, such reassurance can unknowingly serve as a way to avoid engaging with distressing realities.

Hope does not require denying reality.

Indeed, hope that cannot accommodate reality is inherently fragile. If therapists suggest that all outcomes will be positive, clients may be left isolated with the awareness that, in significant ways, this is not the case.

A more enduring form of therapeutic hope is grounded in honesty.

Hope may need to become smaller

Before dementia, hope may be directed towards years or decades: retirement plans, travel, relationships, projects, grandchildren, ambitions.

As dementia progresses, the horizon shortens. This shift does not necessarily eliminate hope; it may simply change its scale.

A person may hope to continue walking to the local shop independently. A couple may hope to take one more holiday together. Someone may want to remain involved in gardening, music, cooking or a community group for as long as possible. Later, hope may become smaller still: enjoying a cup of tea in the garden, recognising a familiar song, laughing with somebody, feeling safe when another person enters the room.

Externally, these hopes may seem modest. However, within the context of the individual's lived experience, they can matter deeply.

Therapeutic practice requires resisting the imposition of external hierarchies regarding what constitutes a meaningful future. A future's value is not diminished by its brevity or unpredictability.

At times, the future value envisioning may be as distant as next year, as near as next Tuesday, or as immediate as this afternoon.

Adaptation is not surrender

Adaptation can also bring hope.

A person who can no longer drive may find ways to stay socially connected. Someone struggling to read novels may still enjoy being read to. A keen cook may no longer safely prepare a meal independently but may still wash vegetables, stir ingredients, or lay the table.

Such adaptations are sometimes interpreted as mere evidence of loss. While they are responses to loss, they may also embody creativity, continuity, and agency.

This distinction matters in treatment settings.

When people with dementia or their families adapt an activity, they are not necessarily “giving in” to dementia. They may be finding a different route to something that still matters.

Therapeutic methods can help clients perceive the underlying significance of what has been lost. For example, if an individual can no longer tend a garden, explore what gardening represented: achievement, solitude, physical activity, aesthetic appreciation, routine, or connection with nature.

Once you identify this meaning, explore alternative ways to preserve aspects of the experience.

The specific activity may change, yet the underlying need often persists.

Connection does not depend entirely upon memory

One of the most convincing challenges to the story of dementia as solely decline is found in the persistence of interpersonal connection.

We often place enormous importance on recognition and concrete memory. Understandably, families may experience great pain when someone no longer remembers a name, relationship or shared event.

However, connection does not depend exclusively on cognitive function.

A person may no longer be able to identify their daughter as their daughter and yet relax when she sits beside them. They may not remember a visit later that afternoon but may experience pleasure during it. They may struggle to follow a conversation while still responding to tone of voice, touch, music, humour or affection.

This perspective prompts us to reexamine what constitutes meaningful experience.

If a person cannot remember a pleasurable moment afterwards, was the pleasure less real?

I contend that the pleasure remains authentic regardless of subsequent memory.

Therapists supporting caregivers can play a key role here. Families may become preoccupied with whether the individual retains conscious memory of them, possibly overlooking other forms of recognition such as familiarity, trust, emotional responsiveness, or physical comfort.

The central question may gradually shift from "Do they know who I am?" to "What transpires in our interactions when we are together?"

This shift does not eliminate grief, but it may allow space for connection to coexist with it.

Hope and grief can coexist

People sometimes assume that hope and grief are mutually exclusive.

In dementia care, however, hope and grief frequently coexist.

A husband may grieve the conversations he can no longer have with his wife while treasuring the way she still reaches for his hand. A daughter may mourn the mother who once advised her while discovering a new tenderness in caring for her. A person living with dementia may fear what lies ahead while still looking forward to tomorrow.

These experiences are not mutually exclusive. Therapeutic settings can provide space for contradictory emotions to exist together without requiring their resolution. You do not need to persuade individuals to feel hopeful rather than devastated, nor should you interpret moments of enjoyment as evidence that grief has been resolved.

Sorrow and joy, fear and interest, loss and intimacy may all be present simultaneously.

One of the most valuable contributions therapists can make is to allow these different experiences to coexist.

The danger of premature positivity

However, it is important to distinguish between hope and hopeful thinking.

When therapists are uncomfortable about despair, we may move too quickly towards what remains good. A client says, “I am terrified that I will forget my children,” and we respond by emphasising advances in treatment or encouraging them to concentrate on the present.

Although the intention may be compassionate, the outcome can isolate the client.

Sometimes the person needs us to remain with the fear before we look for hope.

A person living with dementia should be able to say, “I hate what is happening to me,” without being reminded immediately of everything they can still do. A carer should be able to say, “I don’t know how much longer I can cope,” without being told how strong they have been.

Prematurely giving hope can serve as a defence against hopelessness, serving the therapist's needs rather than the client's.

Therapeutic hope may be more understated. It may be expressed less as "things will improve" and more as "regardless of what occurs, you will not face this moment in isolation."

A different understanding of dementia ultimately creates challenges that psychotherapy cannot resolve

We cannot talk somebody out of neurodegeneration. We cannot promise that insight, acceptance or emotional strength will prevent future decline.

This limitation may be uncomfortable within a profession fundamentally oriented toward facilitating change.

However, it may also signal a basic element of therapeutic practice.

The value of therapeutic work does not rest solely on the capacity to improve circumstances. At times, the therapist's role is to accompany individuals through situations that cannot be resolved or improved in conventional ways.

Therapists can help individuals articulate fear, support couples as their relationships evolve, help caregivers recognise their own needs without perceiving them as betrayal, discern identity where others see only diagnosis, and safeguard space for emotions such as anger, humour, love, ambivalence, and grief.

Therapists can also keep curious about what possibilities remain.

A future deserving envisioning in the context of dementia need not be devoid of loss. It does not necessitate denial of decline or the conviction that love lessens the innate challenges of dementia.

It may simply be a future in which life retains moments of meaning.

A conversation today. A familiar piece of music tomorrow. A walk next week. A hand held when words are no longer available.

Ultimately, hope in the context of dementia may not rest on the belief that all outcomes will be favourable.

Rather, it acknowledges that, even when circumstances cannot be changed, meaningful experiences can still be found.

You can read the rest of Jurgen's series on dementia here:

Countertransference in Dementia Work: What Comes Up for Us as Therapists?
Why I Believe Therapists Belong in the World of Dementia Care | NCPS
The Power of Validation: Supporting Identity and Agency in… | NCPS
Walking Beside the Carer: How Therapists Can Alleviate the… | NCPS
Adjusting the Frame: How to Work Therapeutically When… | NCPS
The Therapeutic Hour as a Sanctuary: Creating Safety and… | NCPS