The relationship between quality of life and dementia is important for both people living with dementia and those who care for them.
Quality of life is personal. What makes life meaningful, comfortable and enjoyable for one person may be very different for another.
For some people, quality of life might mean spending time at the beach, gardening, seeing family, listening to music or continuing a favorite hobby. For others, it may be having a sense of independence, feeling safe or simply being involved in everyday decisions.
For people with dementia, changes in memory, communication and everyday abilities can affect quality of life. However, dementia does not remove a person’s ability to experience enjoyment, affection, comfort, sadness, joy or connection with others.
The World Health Organization notes that although dementia can increasingly affect everyday functioning, appropriate care and support can help improve quality of life and daily functioning.
This is why modern dementia care increasingly focuses on the person rather than simply the disease.
The person’s preferences, relationships, abilities, health and environment can all influence how well they are able to live with dementia.
Research into quality of life and dementia continues because quality of life is subjective and can be difficult to measure.
What is clear is that good dementia care should consider the whole person. This includes their physical health, emotional well-being, relationships, interests, abilities and wishes.
How to Enhance Quality of Life for People With Dementia
There is no single approach that will suit everyone. However, person-centered care can help caregivers and families support a person to live as well as possible.
Here are four important areas to consider.
Understand What Quality of Life Means to the Person
It can be easy for a caregiver to assume that their own idea of a good quality of life is also what the person with dementia wants.
Instead, try to understand what is important to that individual.
The principles of person-centered dementia care recognize each person’s history, personality, preferences, strengths and individual needs.
Talk about likes and dislikes where possible. Pay attention to the people, places, routines and activities that bring pleasure, comfort or a sense of purpose.
Interests and abilities may change as dementia progresses, so activities may need to be adapted rather than abandoned.
A person who previously loved gardening, for example, may still enjoy watering plants, arranging flowers or simply spending time outside.
The aim is not necessarily to keep doing things exactly as they were done before. It is to preserve the enjoyment and meaning behind them.
Support Independence and Choice
Supporting someone to remain as independent as possible can make an important contribution to quality of life.
Dementia may gradually make some everyday tasks more difficult, but this does not mean the person should automatically lose control over decisions they are still able to make.
Offer manageable choices and encourage participation.
This may be something as simple as choosing what to wear, deciding between two meals, helping prepare food or choosing how to spend the afternoon.
Current dementia-care guidance encourages people living with dementia to be involved in decisions about their care and daily life wherever possible.
The amount of assistance required will change over time. The goal is to provide enough support to keep the person safe without unnecessarily taking over tasks they can still perform.
Maintain Social Connections
Dementia can sometimes make social situations more difficult. A person may have trouble following conversations, remembering names or finding the right words.
As a result, some people gradually withdraw from friends, family and community activities.
Maintaining relationships and meaningful social contact can be an important part of well-being.
Dementia Australia recommends activities that reflect the person’s interests and abilities and help them remain socially active and engaged. These might include spending time with family, having coffee with a friend, listening to music, gardening, walking or joining an appropriate community group.
Social interaction does not always need to involve large groups or organized activities.
For some people, a quiet visit from a familiar friend, looking through photographs together or sharing a favorite activity can be more enjoyable.
Watch the person’s response and avoid overwhelming them. Quality of interaction is generally more important than the number of activities.
If there are signs of persistent sadness, withdrawal or other changes in mood, it may also be worth discussing these with a health professional because depression and dementia can sometimes occur together.
Monitor Physical and Emotional Health
Physical health can have a major effect on quality of life for someone living with dementia.
Pain, dental problems, poor eyesight or hearing, infections, medication side effects, dehydration and other medical conditions may cause discomfort or changes in behavior.
These problems can sometimes be difficult to recognize if the person has difficulty explaining what they are experiencing.
Regular contact with a GP, dentist and other appropriate health professionals can therefore be important.
The NICE dementia guidelines specifically recommend assessing and treating other health conditions in people with dementia and paying particular attention to possible pain.
Caregivers should therefore be alert to changes such as unusual restlessness, withdrawal, facial expressions, sleep disturbance or sudden behavioral changes that could indicate discomfort.
You can read more about recognizing pain in people with dementia.
Good nutrition, appropriate physical activity, adequate sleep and opportunities to spend time outdoors can also contribute to general health and well-being.
Closing Thoughts
Supporting quality of life should remain an important part of dementia care throughout the progression of the condition.
Dementia may change what a person can do, but it does not remove their individuality, relationships, preferences or need for meaning and connection.
By listening to the person, supporting independence where possible, maintaining important relationships and responding to changes in physical and emotional health, caregivers can provide care based on the person’s strengths, abilities and wishes.
Ultimately, when considering quality of life and dementia, the most important question is not simply what has been lost, but what still matters to the person and how they can be supported to continue experiencing it.