Here’s a free collection of resources about Dementia.

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Dementia Survey

We’re surveying people about their experiences with Dementia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Dementia**

Dementia Symptoms

What symptoms have you or your loved one experienced?

  • Fear, anger, frustration, fainting, weight loss, bladder retention. (Jo, 48 years old)
  • Short term memory loss, night time wandering and disturbed erratic sleep pattern. (Anonymous, 50 years old)
  • Inability to verbally communicate. (Susan, 60 years old)
  • My Mom has full blown dementia and is currently in hospice care. (Karen, 61 years old)
  • My mother started off with not recalling words; this has gradually increased to the point where now it’s very difficult to have a meaningful conversation with her. She was diagnosed at first with MCI (mild cognitive impairment) which led to a later diagnosis of vascular dementia. She also has organic brain damage from a fall in which she suffered concussion and internal damage to her right eye. She is 88. She hallucinates, is disoriented as to time, day, date, and what happened when. She still recalls her childhood memories, but they are getting more muddled recently. She has eyesight problems, is doubly incontinent and is quite deaf. (Christine, 64 years old)
  • Early onset Alzheimers. (Anonymous, 67 years old)
  • My aunt and uncle can only recall old memories. (Angela, 70 years old)
  • I have the early onset of Alzheimers. (Stan, 74 years old)

Dementia Causes

Is there anything you believe contributed to or caused your or your loved one’s dementia?

  • A very mild stroke according to the doctor (ITA, I think they called it). (Anonymous, 50 years old)
  • Being isolated and neglected. (Susan, 60 years old)
  • She had a brain aneurism surgery in 1998. It saved her life, but now she has dementia and her head is collapsing. (Karen, 61 years old)
  • She had one then the other hip replaced and has had problems with the right hip becoming displaced (a total of 9 times now, 3 of which were within the last 3 months). She is too frail to undergo further surgery. (Christine, 64 years old)
  • Don’t know. (Anonymous, 67 years old)
  • No idea. (Angela, 70 years old)
  • Nothing other than old age. (Stan, 74 years old)

Dementia Facts

What are some interesting facts about Dementia?

  • No one has any answers and there is little or no help if you live in a village. (Jo, 48 years old)
  • Any concerns are excused as being part of dementia. (Susan, 60 years old)
  • It sucks! (Karen, 61 years old)
  • One of our group members wrote the following, which I think sums up the situation quite well:
  • D… Difficult, Demeaning, Destructive and Daily.
  • E… Extreme, Emotional, Empty and Embarrassing.
  • M… Moody, Meaningless, Mad and Misunderstood.
  • E… Everlasting, Exhausting and Excessive.
  • N… Needy, Nervous, Nonstop and Nasty.
  • T… Trying, Trapped, Traumatic and Taunting.
  • I… Isolated, Impatient, Intense and Irritable.
  • A… Angry, Abusive, Absent and Aggressive. (Christine, 64 years old)
  • It appears indiscriminate as to who gets it. (Anonymous, 67 years old)
  • You can have a contented relationship if you float the surface. (Angela, 70 years old)
  • The number of people diagnosed with dementia is increasing, likely because we are living longer. It is showing up in more statistics. (Stan, 74 years old)

Dementia Memory Loss

What’s your or your loved one’s experience with dementia-related memory loss and treatments for it?

  • You need to keep them stimulated; medication doesn’t help. (Jo, 48 years old)
  • Progression can be slowed by physical and mental activity, so keep the brain active. (Anonymous, 50 years old)
  • No treatments given. (Susan, 60 years old)
  • No treatments, she is too far gone. Just patience and memories. (Karen, 61 years old)
  • Frustration in the early stages, and still on a “good” day. Treatment? What treatment? (Christine, 64 years old)
  • Special awareness, serious memory issues. Has used Donepezil since 2011. (Anonymous, 67 years old)

Dementia Difficulties

What are the hardest aspects of living with dementia? If you are not affected by it, what are the hardest aspects of coping with a loved one’s difficulties with dementia?

  • Feeling helpless. They need care 24/7, so you need to help and be helped. (Jo, 48 years old)
  • Having to keep repeating what we say and do is a bit like being in a time lapse due to her memory issues. (Anonymous, 50 years old)
  • Knowing she is being ignored/exploited and cannot complain for herself. (Susan, 60 years old)
  • Them not knowing who you are. (Karen, 61 years old)
  • The constancy of demands for the carer almost 24/7. I imagine that, from my mother’s point of view, it is the confusion which is hardest, although I think that she is more and more in a world of her own, so maybe doesn’t quite realize how confused she is. (Christine, 64 years old)
  • I am a carer, the worst thing now is having intelligent conversation or being able to do anything asked. She has expressive aphasia. (Anonymous, 67 years old)
  • Getting the important stuff done like personal hygiene, hair wash, etc. (Angela, 70 years old)
  • Facing up to the fact that you can remember with clarity what you have done over the years of your life but can’t always remember what you had for your evening meal the previous night. (Stan, 74 years old)

Dementia Advice

What encouragement/advice can you give others who experience dementia or who care for someone with dementia?

  • Don’t leave it too late. Get help straight away with care so the dementia patient gets used to others helping them. (Jo, 48 years old)
  • Loads and loads of patience, try not to speak to them too critically; try not to show frustration or annoyance. Share as much of the burden of caring as possible with others. Regular breaks are essential to maintain your own health and sanity. (Anonymous, 50 years old)
  • Never go into a home without a camera. (Susan, 60 years old)
  • Breathe. (Karen, 61 years old)
  • Get help, in whatever form you can as soon as possible. Don’t wait until you are at your wits’ end. Apply for some respite care. (Christine, 64 years old)
  • Read “Contented Dementia” by Oliver James (Angela, 70 years old)

Dementia Treatments

What’s been your experience with treatments (medication, therapy, etc.)?

  • Nothing. (Jo, 48 years old)
  • No treatments/therapy offered. (Susan, 60 years old)
  • Her caregivers are wonderful. (Karen, 61 years old)
  • None of it has any effect. (Christine, 64 years old)

Dementia Recommendations

Anything you’d recommend for someone with dementia or for someone who cares for a loved one with dementia?

  • Maintain their activity levels as long as possible when they are up and awake. Concentrate on the things they like rather than just what is the best for their health – there must be a balance between the two. (Anonymous, 50 years old)
  • Remember they are a still the same person – not a job to be done. (Susan, 60 years old)
  • Get someone to come in and give you a break for a few hours several times a week. This helped me so much. I found a great guy who has helped me deal with this as he took care of his mom with ALZ. (Karen, 61 years old)
  • Get help and respite care. (Christine, 64 years old)
  • I believe donepezil helps. Get as much help as you can from a local Carers Support group, even for only a few hours a week; it makes such a difference. (Anonymous, 67 years old)
  • Just love them and don’t expect anything in return. (Angela, 70 years old)
  • Don’t let it get you down. Keep your mind active, attend memory groups, keep up with your hobbies. Find new things to do that fit in with your new life problem and that stretch your limits in a reasonable manner. (Stan, 74 years old)

Dementia Resources

What specific resources have you found most helpful?

  • None, no one seems to know anything. Everyone is very different. (Jo, 48 years old)
  • Support from other family members/friends. A day care center has been a real godsend. (Anonymous, 50 years old)
  • Installing a camera. Love. (Susan, 60 years old)
  • Support groups that I attend every Monday morning. (Karen, 61 years old)
  • Local social services department. (Christine, 64 years old)
  • YWPD Berkshire, AAA Berkshire, Alzheimer’s support, Wiltshire Carers Support. (Anonymous, 67 years old)
  • Online Facebook support groups (Angela, 70 years old)
  • Technology; my smart phone is a way to store my photos, music, a list of people I know, a diary, a reminding device, and a map locating medium. (Stan, 74 years old)

Dementia Stories

Share an experience you’ve had related to living with dementia or with a loved one affected by dementia.

  • My mother thinks that there are any number of people in the house (she is cared for by my father). She thinks that there are different people for each job; a cook, a driver, someone who does the laundry, a cleaner, someone who does the shopping, etc. Sometimes she asks my father (whose name is Derek) whether he has seen Derek anywhere today. He drops my mother off with me while he does the shopping each week, and we always have the same conversation about who is whom in the family and how we are all related. She never remembers it. (Christine, 64 years old)
  • Learn how to talk to your sufferer, it’s not their fault. Keep calm and don’t shout or get cross. That just makes it worse. (Anonymous, 67 years old)
  • I went to heat up my breakfast in the microwave. I tried to start it, but it wouldn’t work. I figured out after five minutes that I was pressing the wrong button. (Stan, 74 years old)