Table 3 Important aspects of a good end of life with dementia.
From: Cross-cultural conceptualization of a good end of life with dementia: a qualitative study
Themes and Categories | Codes (examples of important items) |
|---|---|
Pain and Symptoms Controlled | |
Comfort care provided | Care aimed at maximising feelings of comfort |
Physical symptoms controlled | Controlled pain and burdensome symptoms such as difficulty breathing, confusion, bedsores, contractures etcetera that cause discomfort |
Function preserved | Maintenance of function |
Special needs addressed | Identifying discomfort |
Balanced treatment, avoiding overtreatment or undertreatment | |
Being Provided with Basic Care | |
Maintenance of hygiene | Physical hygiene, clean clothes, clean environment |
Timely support | Being helped at the right time, when the person has needs, for example, to be supported when wanting to go to the toilet |
Continuity of care | Remaining in the same place of care, avoiding changing care provider, information about the person is shared to make sure care processes continue smoothly |
A Place like Home | |
Familiarity with environment, people and care | Sense of familiarity in the place, familiar atmosphere with friendly people, alignment with what person is used to, such as similarity of environment, system, routines and devices |
The person accepts, adapts to the last place | |
Avoiding transfer to elsewhere such as hospital or emergency room | |
Comfortable environment | Individual room/personal space, quiet room, relaxed/peaceful environment, enough space, free to go out for fresh air |
Preferred place of care | Having opportunities to choose the last place |
Staying at home | |
Availability/access | Availability of nursing home if needed |
Having Preferences Met | |
Personal preferences being considered and addressed | The person's spiritual and religious preferences are respected and met |
Not being forced to do something unpleasant | |
Receiving support in discussions about decisions | Opportunity and support for discussions to make decisions |
Having an attorney | Having a proactive, trustworthy, well-known attorney |
Care planning consistent with wishes | The care is being provided based on the person's wishes |
Preference being prioritized | The preference of the person* is being prioritized over family preferences*This includes a preference to protect family and have them decide |
Receiving Respect as a Person | |
Being paid attention to | Being paid attention to |
Being treated attentively | Being treated carefully, the person feels no fear, for example, through gentle care such as the person being spoken to with respect, the caregivers explaining to the person what they are doing while providing care, protecting privacy |
Being treated with equity | Being treated in an equal way as a person without dementia (equity) |
Being treated by trustworthy caregivers | Being cared for by trustworthy caregivers |
Allowed freedom | Free from physical restraints |
Identity Being Preserved | |
What the person looks like | The person looks similar as before through wearing clothes that fit the style the person wore in the past |
The person's hair is groomed in a way that fits the person’s style | |
How the person is treated as an individual | The person gets daily support to keep her/his image |
The person is treated in a way that fits with his/her personality (personalised care) | |
How the person spends time | The person keeps his/her personal daily routine |
How the person reacts | The person behaves as she/he was |
The person is able to recognize the faces and names of his/her family | |
Being Connected | |
Keep preferred stimulation | The person receives gentle touch according to their needs |
The person feels joy to taste, communicate; enjoys music, peaceful sounds, voice of family, the beauty of nature | |
Sense of connection with others | The person keeps relationships with familiar people |
Family/familiar people present at the time of dying | The person is surrounded by family/familiar people (may include priests) when she/he dies |
Care for Caregivers (Not being a burden to others) | |
Caring for caregiver’s emotional and psychological well-being | People with dementia wanting to avoid emotional or psychological distress in caregivers |
Caring for the caregivers’ finances | Not being a burden financially |
Caring for caregivers’ health | Independent self-care as long as possible to minimise care burden or stay at home |
Satisfaction with Life and Spiritual Well-being | |
Feeling peaceful | The person feels a sense of comfort, peace, safety, and sometimes pleasure (spiritual/psychosocial comfort) |
Sense of being protected | The person feels close to a higher presence (i.e., God, Allah, Angels, Saints, Hotoke) |
Acceptance of life closure | The person accepts the time of his/her death |
Valued as a person | The person is loved |
Living with hope | The person has hope for the people around, narratives of life retained as a legacy to others, give something to others, to contribute to others |