The person at the centre

What are major needs of people with dementia?

The needs of people with dementia are complex and individually diverse. They can be assigned to five major categories: information, symptom control, activity and participation, social relatedness, autonomy and independence. Interventions that meet the needs contribute to improving their quality of life. The needs of people with dementia change as the condition progresses.

Five categories of needs

major needs of people with dementia

Meeting needs improves quality of life

Changing of needs during the course of dementia

StageInformationTreatment & carePsychosocial needsPhysical needs
Available services
Financial support
Advance directives
Antidementia drugs
Non-pharmacological interventions
Assistive technology
Being useful
Having a role
MiddleAvailable services
Help with transitions
Memory aids
ADL assistance
Behaviour management
Assistive technology
Emotional support
Social contact
Preservation of identity
Spiritual support
Basic nursing
LatePhysical wellbeing
Pain management
Basic nursing

Meeting the needs improves quality of life

meeting needs improves quality of live in dementia

Can people with dementia participate in decision-making?

The ability to evidence a choice and making the reasonable choice is unimpaired at the stage of mild dementia. However, complex appreciation, reasoning and understanding are already compromised. The ability to provide complex consent rapidly declines over time. This shows that people with dementia need to be involved in decision-making at an early stage. Moreover, decisions and choices must be presented in a simple, understandable way and step-by-step.

Decision-making capacity of people with mild dementia

Decision making capacity in dementia in numbers

What are the major needs of informal carers?

The major needs of (family) carers of people with dementia include information (about diagnosis, prognosis, treatment options and available services, organising and financing care), strategies for dealing with problem behaviours of the person with dementia (apathy, aggressiveness, irritability and others), ways of coping with own difficult emotions (anger, distress, loneliness, grief, depression), advice for managing the change in roles and relationships (novel tasks, role conflict, loss of mutuality and closeness) and coaching on communication.

Needs of informal (family) carers

StageInformationPsychosocial needsServices
EarlyReceiving a diagnosis
Symptoms and progression
Dealing with memory loss
Access to services
Meaningful activities
Accepting the diagnosis
Dealing with changing roles and relationship
Carer support group
Assistance with housekeeping
Home helpers
Assistive technology
Middle Managing behavioural problems (agitation, irritability, apathy)
Dealing with physical symptoms (nutrition, hygiene, incontinence)
Dealing with own emotional problems (guilt, anger, grief)
Role conflict
Pursuing own interests
Fighting isolation
Own health problems
Financing care
Safety issues
Environmental modification
Respite care
Adult day care
LateNursing home admission
Choosing appropriate institution
End-of-life care
End-of-life decisionsAccessible and affordable facilities

Meeting complex needs requires a care plan

Needs do not arise all at one time, and they change considerably during the course of dementia. Interventions need to be planned and coordinated in order to come at the point of need and take advantage of synergies. Ideally, the professionals involved should work together to create an individual care plan that takes into consideration individual needs related to gender, ethnicity, age, level of education, previous lifestyle and physical health. The care team should be led by a physician (e.g. the GP), nurse or social worker.

Meeting complex needs requires a team and a plan

Collaboration pays

Working as a team requires some extra efforts and time of professionals, but it is likely to pay in terms of greater treatment efficacy, less requirement of repeat visits and crisis management, and greater treatment satisfaction on the part of people with dementia and carers. Working together provides benefits for everyone involved.