What I Wish People Knew About Dementia

1. Dementia changes sensory experiences, but adaptations can improve quality of life

I don't have someone rushing me or questioning. The one thing I always need more of is time.

Sensory changes are common. Dementia affects not only memory but also how individuals perceive and interact with their environment through their senses. These changes can include:

• Altered taste and smell perception
• Increased sensitivity to noise (hyperacusis)
• Visual disturbances and hallucinations
• Changes in touch sensitivity

Adaptations can help. Simple modifications can significantly improve quality of life:

• Using contrasting colors for better visual recognition
• Providing meals with varied textures and flavors
• Implementing noise reduction strategies
• Utilizing assistive technologies like reminder apps

By understanding and accommodating these sensory changes, individuals with dementia can maintain a greater sense of independence and enjoyment in daily activities.

2. Relationships evolve with dementia, requiring open communication and understanding

We spend a lot of time understanding that others don't understand our dementia, and how we are and how we feel. We end up having to make allowances for them.

Role reversals are common. As dementia progresses, relationships often shift, with family members taking on more caregiving responsibilities. This can be challenging for both parties, as traditional dynamics change.

Open communication is crucial. Honest discussions about needs, feelings, and expectations can help navigate these changes. Some strategies include:

• Regular family meetings to discuss care plans
• Involving the person with dementia in decision-making when possible
• Seeking support from professionals or support groups

It's important to remember that the person with dementia is still the same individual at their core, even as their abilities change. Maintaining respect, dignity, and connection in relationships can greatly enhance quality of life for all involved.

3. Effective communication is crucial, even as verbal skills decline

Communication comes in all shapes and forms. When dementia cruelly affects the power of speech or even steals it away completely, it's other people that can often make the wrong choice to stop talking to us or stop visiting – to stop giving us a chair at the table.

Non-verbal communication gains importance. As dementia progresses, individuals may struggle with verbal expression, but their ability to communicate through other means often remains intact. Key aspects of effective communication include:

• Body language and facial expressions
• Touch and physical presence
• Tone of voice and emotional cues

Adapting communication styles. Caregivers and loved ones can enhance communication by:

• Speaking clearly and slowly
• Using visual aids or gestures
• Allowing ample time for responses
• Focusing on emotions rather than factual accuracy

Maintaining open lines of communication, even when verbal skills decline, helps preserve relationships and ensures that the individual with dementia feels valued and understood.

4. Creating dementia-friendly environments enhances independence and well-being

I have forewarning to set aside my diary for the day, or return back under the duvet.

Physical environment matters. The design of living spaces can significantly impact the independence and well-being of individuals with dementia. Key considerations include:

• Clear signage and visual cues
• Adequate lighting to reduce confusion
• Removal of potential hazards
• Incorporation of familiar objects and personal items

Community support is crucial. Dementia-friendly communities can greatly enhance quality of life by:

• Training local businesses to better serve those with dementia
• Creating accessible public spaces
• Offering support services and social activities
• Raising awareness to reduce stigma

By adapting both home and community environments, individuals with dementia can maintain a greater sense of autonomy and engagement in daily life.

5. Emotions persist in dementia, though their expression may change

I believe that we are emotionally functional right through to the end, it's just – as my friend just said – people can't see it, but it's visible if you look carefully enough.

Emotional capacity remains. Despite cognitive decline, individuals with dementia continue to experience a full range of emotions. However, their ability to express these emotions may change over time.

Understanding emotional cues. Caregivers and loved ones can better support emotional needs by:

• Paying attention to non-verbal cues
• Validating emotions, even if the cause isn't clear
• Providing opportunities for emotional expression through art, music, or physical touch
• Maintaining routines and familiar environments to promote emotional stability

Recognizing and respecting the emotional lives of individuals with dementia is crucial for maintaining their dignity and quality of life throughout the progression of the disease.

6. A positive attitude and coping strategies are vital for living well with dementia

Attitude is half the battle when it comes to a disease like dementia. The way that we address these fogs, these short-circuits – call them what you like – can minimise or maximise what's happening to us.

Mindset matters. A positive attitude can significantly impact how individuals cope with dementia. Key aspects of a positive mindset include:

• Focusing on remaining abilities rather than losses
• Finding joy in simple pleasures and everyday moments
• Maintaining a sense of humor
• Staying socially engaged and pursuing hobbies

Developing coping strategies. Individuals with dementia can better navigate challenges by:

• Creating routines and using memory aids
• Breaking tasks into smaller, manageable steps
• Practicing mindfulness and relaxation techniques
• Seeking support from peers and professionals

By cultivating a positive attitude and developing effective coping strategies, individuals with dementia can maintain a higher quality of life and better manage the challenges associated with the disease.

7. Professionals and family members play a key role in shaping the dementia experience

It's the professionals who can make you feel negative or positive about your diagnosis. They say: "There's nothing we can do and you just have to do what we tell you and prepare for the end."

Education is crucial. Healthcare professionals and family members need accurate, up-to-date information about dementia to provide effective support. This includes understanding:

• The various types and stages of dementia
• Person-centered care approaches
• Communication strategies
• Available resources and support services

Attitude impacts care. The attitudes of professionals and family members significantly influence the experience of individuals with dementia. Positive approaches include:

• Focusing on remaining abilities rather than deficits
• Promoting independence and dignity
• Involving the person with dementia in decision-making when possible
• Providing emotional support and understanding

By adopting a positive, informed approach, professionals and family members can greatly enhance the quality of life for individuals living with dementia and help them maintain a sense of self and purpose throughout their journey.

Last updated: November 25, 2024