Disease-specific support
Dementia
A long, stepwise loss — for the person and for everyone who loves them. Caregiver strain here is the highest of any condition.
Emotional challenges
- Insight in the early stages: knowing what is coming, and fearing it.
- Frustration and shame at word-finding failures and getting lost.
- Loss of independence, driving and finances.
- Agitation and distress that are usually communication, not aggression.
- Depression and apathy, often mistaken for the dementia itself.
What the family faces
- Grieving someone who is still present — ambiguous loss in its purest form.
- Disagreement about care homes, driving and money.
- Being forgotten, or being mistaken for someone else.
- Managing visits when the person becomes distressed by them.
- Guilt when relief follows a placement decision.
What the caregiver faces
- 24-hour supervision, wandering, and disturbed nights.
- Repetition, resistance to personal care, and occasional aggression.
- Social isolation as friends drift away.
- The highest rates of depression and burnout of any caregiver group.
- Guilt on both sides of the care home decision.
Practical coping strategies
- Enter their reality rather than correcting it; orientation arguments cause distress and change nothing.
- Look for the need behind the behaviour: pain, thirst, toilet, boredom, fear, infection.
- Simplify: one instruction at a time, short sentences, calm face, no quizzing.
- Keep routine, familiar objects, music and photographs; music reaches people very late.
- Get legal and financial affairs arranged while capacity remains.
- Book respite early and repeatedly — waiting until crisis point removes your choices.
Where to find support
- Memory clinic and admiral or dementia specialist nurses
- Dementia charities' helplines and carer courses
- Day centres, sitting services and respite care
- Carers' assessment and benefits advice
Afya Companion offers education and self-help support. It does not diagnose, treat or replace care from your doctor, nurse, psychologist or dietitian. If something in your health changes, speak to your care team.