The ideas of dignity and quality of life mean different things to different people. Those with Alzheimer’s disease must depend on their caregivers to help preserve quality of life for them. Like people of all ages, the person with Alzheimer’s experiences feelings of joy, sadness, fear, anger, and jealousy. As a caregiver, you need to recognize and respond to these feelings. A person with this disease needs to be feel valued, worthwhile, and positive about life.
10 Ways to Preserve Dignity:
- Learn and use optimal communication techniques*. This ensures that mutual understanding is achieved. Also, learn how they prefer to be addressed.
- Respect for privacy. Never enter a person’s home or room without identifying yourself and securing permission to enter and engage with them.
- Engage the person as an equal at eye level or below (modeled after Teepa Snow’s Hand Under Hand ™ Technique), speak to them as an adult, not a child, with appropriate pacing and enunciation for them to hear you. Use body language and attention that shows your openness and sincerity.
- Always connect. This is important to obtain before launching into any task.
- Solicit frequent input and have them direct all care as far as they are able. Check in frequently using Dr. Allen Power’s acronym “SEE: Slow down, Engage, Empower”.
- Do tasks with, not to or for. Engage the person during any tasks and do not treat them like an object.
- Remember: “no” means “no”. Never force care on a person who is declining.
- Do not argue with or deny what people are feeling or expressing. Seek to understand their perspective.
- Always describe with compassion. Use words that you would want used to describe you. Do not use derogatory labels (e.g. “wanderer”, “sufferer”) or terms that objectify or blame people.
- Be open to learning from the person. Dr. Allen Power’s advice on reframing engagement is “in any interaction, assume the other person is smarter than you are.”
Create opportunities for success, enhancement of self-esteem, and well-being within the care environment – for people with dementia and their caregivers.
- Establish a sense of personal worth (we are valuable to others).
- Create a sense of empowerment (we can make things happen).
- Enhance social confidence (we can reach out to others and there will be a response).
- Instill a sense of hope (despite setbacks, life goes on).
- Do ONLY what the person with dementia can no longer do, and no more – thereby allowing the person to retain life skills for as long as possible, providing nurturing and encouragement.
- Have reasonable expectations of people with dementia which allow reciprocity between them and their caregivers, thereby promoting the dignity of the individual and the relationship.
“Quality of Care or Quality of Life”
Quality of resident care and life is difficult to accurately assess. Clinical parameters, which seem relatively easy to quantify, are understandably, popular for inferring quality. The desire to have measurable, reproducible standards, the scientific methodology behind medical models, and the pressure to report simplified numbers to consumers and regulators have driven most of the factors we currently use in long-term care to gauge our relative success. Quality of care is concerned with the structure, processes and outcomes of clinical matters. Structure refers to staffing variables and facility-resident mix.
“Resident/Family Cited Features of Quality of Life”
For the Cognitively Intact
- Staff behavior
- Freedom of choice
- Quality of food
- Compatible roommate or private room
- Getting outside in good weather
- Maintaining contacts with family and friends
- Getting a good night’s sleep
- Infrequent contact with the behaviorally disturbed
For the Cognitively Impaired
- Pleasurable interaction (e.g., music, appropriate activities
- Avoidance of discomfort (e.g., forced baths, restraints)
Quality of Life Measures
Senseof safety, security andorder
- Physical comfort
- Meaningful activity
- Functional competence
- Autonomy / choice
- Spiritual well-being
An Alzheimer’s Disease Bill of Rights
- To be informed of one’s diagnosis.
- To have appropriate, ongoing medical care.
- To be productive in work and play as long as possible.
- To be treated like an adult, not a child.
- To have expressed feelings taken seriously.
- To be free from psychotropic medications if at all possible.
- To live in a safe, structured and predictable environment.
- To enjoy meaningful activities to fill each day.
- To be out-of-doors on a regular basis.
- To have physical contact including hugging, caressing, and hand-holding.
- To be with people who know one’s life story, including cultural and religious traditions.
- To be cared for by individuals well-trained in dementia care.
Helping Maintain Quality of Life for Caregivers
What happens at a support group meeting? People talk! It is a place to express feelings – of joy, of sadness, of anger or frustration – among a group of people who can listen and share similar experiences. It’s a chance to meet others to exchange ideas, thoughts, and resources. It is a way to maintain YOUR quality of life. Check the www.txalz.org website for a listing of offerings near you!
For more information on optimal communication techniques*, contact us for a guide on effective communication strategies, do’s and don’ts, and ways to enhance your interactions with your loved one.