joanjoan: Can you give us advise about nursing homes? About what you looked for, in choosing one? Do they all have the level of interaction that the person needs?
The Globe and Mail: Does anyone have any advice for Joan?
Donna Macdiarmid: Joan, Some of the things I considered were:
1. Distance for me to travel as I knew I would want to be there often
2. Which ones came highly recommended by my Alzheimer famil
3. My preference for a smaller setting - not so much like an institution
4. What activities were offered for stimulation, etc.
5. What kind of food would be served - didn't want it to be like hospital food - wanted it to be prepared on site.
6. Wanted a homey atmosphere.
Linda Jackson: Nursing homes are very highly regulated and have consistent standards that they are expected to be in compliance with. What is different in nursing homes is the culture. I would meet with staff and talk with them about the staff/ family and resident interactions. Is their special programs that enhance the quality of life of the residents ( pet programs , intergenerational programs, music). What does the physical enviroment look like. Are there private spaces for families to gather? Is there a family council and resident council. Are they acitve? Has there been lots of complaints? Is there access to outdoor spaces. These are some things I would look for
André Picard: Linda, a recent study showed that 40 per cent of people caring for a loved one with dementia suffered "distress" such as depression and feeling of powerlessness. Can you comment on the importance of caregivers taking care with their own health (mental and physical), as well as carring for their loved ones.
Donna Macdiarmid: Linda, I totally agree. I forgot the importance of family gathering spaces and outdoor spaces. Both very important as is music. It is so remarkable to see the residents' response to music - with eveything from classical, to hymns to "hoe down" music.
Linda Jackson: This is so critical Andre and very difficult for many caregivers to accept. Caregivers are at risk of depression and other health issues. My biggest recommendation is to recognize the importance of not caregiving in isolation. Reach out to your local community support agency, your family, other caregivers and do not feel badly taking some assistance. Groups and respite and day programs have been proven to lengthen the time caregivers can manage in their role.
The Globe and Mail: We're nearing the end of our discussion, so André's last question will be the final one. Linda and Donna, if you want to provide your answers to André's question, and then give any final thoughts you might have, that'd be great.
Donna Macdiarmid: Linda, respite and day programs work well if your loved one will agree to go. I found that Roger wanted me to be glued to his side all the time; his confidence level was so diminished that he seemed afraid to go. Just an observation.
The Globe and Mail: Any final thoughts?
Linda Jackson: It is wonderful to start this discussion, knowing that there will be many more caregivers in the future. My best recommendation is to think about the best supports that are available for your own situation and be OK asking for this assistance . More people will be cared for at home so we need major changes to support caregiving in the community.
Donna Macdiarmid: Great discussion. Thanks for including me. Like to meet you, Linda.
Linda Jackson: me too Donna, I was inspired by your love story and strength, Linda
Donna Macdiarmid: Thanks a lot. My love story has not ended!
The Globe and Mail: Thanks very much to everyone who participated in today's discussion. Look for another discussion as part of The Globe's Dementia: Confronting the Crisis series tomorrow at 1 p.m
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International Alzheimer's Day
Caregivers' burden: Patients aren't the only victims
Brain games: Why crossword puzzles don't really help
Early diagnosis: Would you want to know?
Signs of hope: The hunt for a cure isn't a complete disaster