Meaningful activities for dementia are often an afterthought in care plans, which tend to focus on safety, medicines and personal care. Yet when people living with dementia and their carers are asked to set their own goals, a different picture appears.
This article summarises a 2024 systematic review completed at the Cicely Saunders Institute, King’s College London (see About the Author). The review gathered the personal goals reported across 21 studies and asked which goals mattered most.
Why Meaningful Activities for Dementia Matter: Background
Dementia is a global health priority. The World Health Organization’s dementia fact sheet notes that approaches without medicines can improve quality of life and daily functioning. Person-centred care asks what matters to the person, not only what is wrong.
A meaningful activity is one linked to a person’s interests and roles, that they take an active part in, and that supports their identity and sense of belonging. Personal goal setting is one way to find these activities and plan around them.
Goal setting also helps people with dementia and their carers talk about priorities and keep up motivation. A 2024 systematic review by Budgett and colleagues found moderate-quality evidence that goal-setting tools are valid and practical in dementia. However, no review had yet pulled together and classified the goals themselves across many studies.
How the Review Was Done
- Design: a mixed-methods systematic review, reported following the PRISMA guideline.
- Search: CINAHL, MEDLINE, Embase and Cochrane, searched in July 2024, plus citation searching.
- Screening: 2,405 abstracts were screened, and 21 studies met the criteria. Each study had to publish the personal goals that people with dementia or their carers set.
- Quality: studies were appraised with the Mixed Methods Appraisal Tool (MMAT).
- Analysis: narrative synthesis, with every goal classified using three World Health Organization frameworks: WHODAS 2.0, ICF chapters and ICF codes.
What the Research Found About Meaningful Activities for Dementia
More than 4,000 personal goals were extracted. Using the six WHODAS 2.0 areas, they fell as follows:
- Thinking and memory (cognition): 35%
- Taking part in life (participation): 33%
- Life activities, such as household tasks and money: 15%
- Self-care: 7%
- Mobility: 6%
- Getting along with people: 4%
Cognition was the top-ranked area in 11 of the 21 studies. Participation, however, appeared among the top five areas in 19 of the 21 studies, more often than any other.
The ICF classification gave more detail. Community, social and civic life appeared in the top five for 14 of the 21 studies. At code level, recreation and leisure ranked first most often.
Goal Attainment Scaling (used in 9 studies) and the Bangor Goal-Setting Interview (used in 5) were the most common tools. Across studies, a shared approach emerged: ask for the big goal first, then break it into smaller, measurable steps.
The review also noted that who sets the goals matters. In two large studies, trained non-clinical facilitators set goals with participants, and their training may have shaped the goals chosen.
How Goals Change Across the Dementia Journey
Most participants had mild to moderate dementia, so the review could not fully trace changes over time. Still, research on the stage before diagnosis shows similar priorities: staying active and involved, socialising, memory, mood and managing money.
Difficulties with planning, organising and handling finances often appear early. This may explain why goals about general tasks and money were common.
Later in the illness, priorities usually shift towards comfort, dignity and pain control. Palliative care models describe several care goals that apply at once, with their weight changing as dementia progresses. Only one study took place in long-term residential care, where mobility goals were common.
Limitations and the Need for Research in the UAE
The findings should be read with care:
- About 70% of the goals came from three large UK studies, with mostly White participants.
- Goal priorities varied widely between studies, even similar ones.
- Only English-language studies were included, and one reviewer classified the goals.
As a result, little is known about the goals of people with dementia in the Middle East. What counts as meaningful activities for dementia may also differ between cultures. Where families traditionally care for their elders, keeping family roles may matter more. Similar research is needed in the UAE, so that dementia services reflect what matters to people here.
About the Author
Mariam Hasan, BScN, RN, MBA, MSc leads best practice development at Enayati Home Health Care, with a specialisation in palliative care.
She recently completed her MSc at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London. Her dissertation, Mapping and understanding personal goal priorities for persons with dementia and their carers (2024), is the systematic review summarised in this article.
