Caring for Someone With Dementia, Alzheimer’s or Parkinson’s

Caring for somebody with dementia, Alzheimer’s disease or Parkinson’s can change over time in ways that are difficult to predict.

The person may still look like the partner or parent you have always known while needing increasing help with memory, medication, movement, communication, personal care or safety. On a good day you may wonder whether you are doing too much. On a difficult day you may wonder how you can possibly continue.

The challenge is not simply the diagnosis. It is adapting to a relationship in which needs, abilities and risks may keep changing.

Do not assume every change is ‘just the condition’

A sudden deterioration deserves attention.

New confusion, reduced mobility, unusual sleepiness, falls or changed behaviour can sometimes have causes other than the underlying condition, including illness, pain or medication issues.

Seek appropriate clinical advice for new or concerning changes rather than automatically accepting them as inevitable progression.

Preserve ability instead of taking over everything

It is tempting to do tasks faster yourself.

But where it is safe, helping somebody continue with familiar activities can protect confidence and independence. NHS dementia guidance recommends supporting people to maintain skills, abilities and an active social life.

That might mean laying out clothes rather than dressing somebody, preparing ingredients rather than taking over the meal, or using labels and prompts rather than answering every question for them.

Repetition and unpredictability can exhaust the carer

Answering the same question for the fifteenth time can test anybody’s patience.

Parkinson’s can bring changing mobility and practical needs. Dementia can affect memory, communication and behaviour. The person may be frightened or confused while the carer is tired and trying to keep the day functioning.

Feeling irritated does not mean you have stopped caring. Notice when exhaustion is changing how you respond and ask what additional support could reduce the pressure.

Plan before a crisis forces the conversation

Think about medication, falls, nighttime needs, driving, finances, appointments, emergency contacts and what happens if you become unavailable.

For dementia, a care plan should identify support needs and be reviewed as circumstances change. A local-authority needs assessment can identify help with everyday tasks, while you can request a separate carer’s assessment.

If needs become primarily health-related and complex, NHS Continuing Healthcare may also need to be considered; later MH360 guides explain that process.

The relationship may involve grief before bereavement

Progressive illness can create repeated losses.

You may miss conversations you used to have, shared activities, spontaneity, intimacy or the feeling that decisions were equally shared. At the same time, the person is still present and may have many abilities and moments of connection.

There is no requirement to choose between gratitude and grief. Both can exist.

Carers Mind is for the carer, not the diagnosis

You may spend every professional appointment talking about the person you care for.

Carers Mind creates space to talk about you: exhaustion, anger, guilt, anticipatory grief, fear of the future, relationship changes or the feeling that your own identity has become smaller.

Counselling cannot change the diagnosis. It can help you process what living alongside it is doing to you.

Important informationThis guide provides general information and is not intended to provide legal, financial, medical or other professional advice. Individual circumstances can be different. You may wish to check current information from official sources and seek advice from an appropriately qualified professional before making important decisions.