Alzheimer’s from the Inside Out

By Richard Taylor, PH.D. who lived with dementia of the Alzheimer’s type for over a decade.


We all interpret our experiences differently

But we are similar in both our experiences and interpretations. Where we are different is in what we do with these.

1. There is such a feeling as kindred spirits among people living with dementia

2. There is such things as universal stigmas engrained in our thoughts and feelings/ but not necessarily in our experiences.

3. These stigmas defy evidence, reasoning and even experience

4. Stigmas become the bookends, the dark glasses, the perceptual filters of our living, of our caregivers, of other professionals who interact with us.

5. These stigmas limit, prescribe, and describe how we think, feel and act with and towards each other.

6. Stigmas should be addressed head on.

7. We all must stop perpetuating them, reminding others of them, using them to meet our own needs.

8. The language, the symbols, the words we use are contaminated, intentionally and unintentionally redefined to meet our own needs.

9. “Cure/Alzheimer’s vs. dementia and all the other forms/sufferer/patient” –  This must stop.

10. We shouldn’t/can’t justify the means used by the well-intended means, which knowingly harm others, make their lives more difficult, and yes I’m talking about people living with dementia who are victimized/used/abused by these means to meet good/I would say any ends.

11. The use of focus group results to design fund raising appeals must stop, and must stop now.

12. Where are the focus group results, which come from groups of people living with dementia, rather than those in authority, those most likely to donate, and those…?

13. If you know one person with dementia you only know one person worth of dementia.

14. The only real experts on living with dementia of this or that sort are those who’re actually living with dementia of this or that sort.

15  We’ll cross those bridges when we come to them is a counterproductive strategy.

16. Many of the meds we now take, the side effects can be worse than the symptoms, mask the real problems, solve nothing (just delay and complicate it,) and generally increase anxiety, not reduce it.

17. The burden of change is more on others than on persons living with dementia.

18. Our needs do not lessen as the severity of our symptoms increase.

19. We are, up to about two minutes after we draw our last breath, whole human beings.

20. We need enablers, not disablers.

21. Reminiscence is over-rated, over-used, and over-depended upon by carers to assure themselves that we are still here.

22. Becoming engaged, staying involved in a purpose, in purposeful activities is a key to fulfilling living out our lives as happy, fulfilled individuals.” 

Submitted by Jytte Lokvig, Ph.D. Alzheimer’s Specialist