Any adults for “day” care? #DAM2015 Day 15

Source: googleimages.com

Source: googleimages.com

It is Day 15 of Dementia Awareness Month 2015, and I feel that it is time we talked about the use of the term “Day” care or “Day” respite. Yes, I know it refers to an adult service, that does not include accommodation overnight, hence the rationale to use these terms, but as far as adults feeling like they are an appropriate place to go, is a totally different bucket of fish! But the picture to the left, of a day care centre for children, is the first image that springs to mind, for most of us.

For some time now, I have been in conversations with others living with dementia discussing whether the use of “day” care/respite is appropriate for adults requiring support. Most of us have said, we will refuse to go if it is called “day care” as that is the place we took our small children, and it not the right term for adults, no matter how good it is.

Personally, I have the same thoughts on the use of Montessori for adults, and for now (yes, I know, I might change my mind!), believe it is wrong, and that the programs that are based on this philosophy are probably excellent, but should be called something else. As always, there is more to the words we use than meets the eye.

Regarding support for people with dementia who only need it during the day or part of the day, calling it “day care” infantilises us. I think the alternatives can vary, depending on what ‘style’ or setting. Why would I want to go to “day care”, and sit in groups with strangers, doing activities such as Bingo or bus trips to visit a shopping centre, if I could join a club that was of interest to me? Yes, institutional care has its place, but really, calling it “day care”…

If it is a group for adults that meets during the day, then it could be called a social club, car club, coffee, group, music group, choir, painting group, gardening club, walking group, and so on, just like it is for everyone without dementia.

If it does all of these things, and more, which to be person centred it needs to, it would work to just call it a community club.

20 thoughts on “Any adults for “day” care? #DAM2015 Day 15

  1. Hiya Kate, I believe one of the problems is that because the funding stream is labeled by the Department of Health and Human Services as “Adult Day Centre” or “planned Activity Group”, agencies have carried this on and actually called their service the funding label. For the last 30 or so years our dementia specific service had been called “Caladenia Day Centre” and “Caladenia Dementia Care” officially, but to all the people who use our service – we are “Caladenia” or “Caladenia Club”. Yes, we have separate letterhead and logos, and only use our full title when it is appropriate for funding bodies and accountability purposes. I know there are services out there who simply call themselves “PAG” which makes no sense to the people using the service, and the title has little or no relevance to those seeking companionship and like minds.

    Keep on bringing these things up – as professionals, sometimes we do things just because they have always been done that way! We need your voice and those like you to shake us up! xx

  2. Just what I meant by the ‘myth’ Day Care is not for adults. Just explained to a colleague from the Memory service why we won’t be going to their Dance Sessions. Quite simply because we will return to our usual Dance Classes when we want to, along with the people we know.

  3. Hi Kate
    I worked along side a group of younger people living with dementia in the UK . They to made the same comments as you.
    Together we persuaded our local NHS Trust to “gift” an ex staff house to use as a base for community activities. The property was in a small cul de sac off site from the trust . The group worked hard to raise awareness by inviting local residents to garden parties which generally involved lots of alcohol and then getting them to donate money or their time !
    When the group did not want to go out the members spent time in the house designing and making a sensory garden or beer/wine making etc. The staff supported the group members by looking at previous skills and knowledge in order to plan (with the person) personalised activities. One of the group members was interested in aviation so we (the staff) were able to negotiate a part time volunteering role at the local aircraft museum.
    When staff went to the house we knocked on the door and waited to be invited in. Opening hours were dependent on needs of the people living with dementia and their carers: the group held the keys to the property anyway.
    Night times were covered by a rota system. People with dementia and their supporters took part depending on circumstances. If the property was needed to be open into the night the the people on the rota would in effect “staff it”.This was a very informal arrangement and was an issue that we were all working on before I left for down under .
    This set up was never called “day care “

  4. This is such a good point and one I completely agree with. Words matter and impact us on a deep level, sometimes without us realizing that. I’ve read a couple articles about coming up with verbiage for the name dementia to something that is more considerate. I think this is a great idea. There are stigmas with words sometimes that cause people to think a certain way, even if it’s not completely accurate. You are spot on with all your blogs and they always give me something to think about. My Mom had severe memory loss for several years, I was her Caregiver, so I know firsthand what goes on when someone is diagnosed with dementia.

    • Thanks Carole. Re the word dementia, most of us with dementia, don’t care either way about that word – what matters is the way people treat us, which is what needs changing! When i was first nursing (mid 70’s) everyone was having this very same conversation about the word cancer – patients with cancer were often left along, no visitors, people scared of them, but eventually, things changed there as well. Sadly, it is the way we are being treated, although sometimes the words used are not helping. I don’t think the word dementia is one of those troublesome words… just my opinion.

  5. Today’s blog got me thinking, Kate. I wrote and published my master’s thesis in sociology in 1976 on the subject of “social distance”. I got it out and read it for the first time in forty years. I was stunned to revisit what I was thinking about in my early 20s.

    I was diagnosed with “brain damage from multiple strokes” which turned out to be caused by a congenital hole in my heart (PFO). I was 53 and had been misdiagnosed my entire life. I had an old person’s illness, but didn’t know I even had a medical problem until I was middle aged. As a child I chose to spend time alone or with much older people like my grandmother. I didn’t fit in with my peers. Now I understand that made sense. I had an old person’s illness, even though no one knew it at the time.

    When I entered graduate school in sociology, I was curious about how age impacted the way people saw me and themselves. I chose to study the concept of “social distance” which is “the grades and degrees of understanding and intimacy which characterize personal and social relations.”

    My approach was unique enough to be published in a professional journal (THE GERONTOLOGIST) and presented at the 1977 American Sociological Association annual meeting on the “Life Cycle:Aging” panel. I chose not to go on for my PhD and haven’t read it since.

    I am fascinated by the parallels between what I wrote about and what you write about so much regarding how people with dementia are viewed and allowed to fit into the world. It’s particularly difficult for those of use with an old person’s disease who are not in fact old.

    I wrote “indications of social distance revealed by prior research include perceptual barriers to interaction…,relegated to a minority group, and extensive…group stereotyping.” I quote another research who found that young people they studied were hesitant about having interpersonal relationships with old people. “Little mention is made of reciprocity, spontaneity, warmth, desire to initiate conversation, or of other qualities that comprise the essential ingredients of friendly contact between peers.”

    Another researcher I quote says “The belief that ‘old people’ are in need of assistance has a patronizing flavor in the present context, but such a belief may serve to assuage guilt feelings deriving from neglect of old people’s emotional requirement.” I think this explains a lot of the well intentioned, but uninformed and insensitive care options set up by the families of those with dementia, especially older ones who for whatever reason are not able to control their own options after being diagnosed with dementia.

    My research found that social distance between all ages and those over 65 was significant, even if they were over 65 themselves. Since dementia is seen as an “old person’s” disease, there it is even more of a challenge to create dementia care alternatives that feel personal, supportive, nurturing and challenging.

    Whether it’s age or an age-associated illness, the bottom line is that it doesn’t even make sense to think that most people who have never experienced something personally can really understand the needs and world view of someone who has. This is a slow but important and obtainable change that can only happen when people with dementia speak up themselves and demand to be heard. Thanks for being a consistent voice, Kate.

    If anyone is interested in the complete article, email me at ivajanew@gmail.com.

    • Hi Jane,
      Thanks so much for joining the conversation on this, and for the link to the complete article, which I will definitely read. The parallels are indeed there, and as you say, having an ‘old persons disease’ makes it that much more challenging.
      Kate 🙂

  6. Hi from NZ, I thoroughly enjoy the thoughts and ideas expressed. I’m in the admin side but I did some on-line papers on dementia and it opened a whole better world of understanding as does this blog. I want our society to care better, I want to be part of it and I feel this starts with understanding. Thank you for your insights. 🙂 Maxine

  7. Yes, there is power in words. Sometimes we do not realize how strong their implications can be! Thanks to you I’ve started a personal campaign to change some of the words used at the facility where Gregory is living. Two examples are “cloth napkins” instead of “bibs” and “paper pants” or “under pants” instead of “diapers” or “Pampers.”

  8. I recall when my dear Dad was diagnosed with ‘younger onset dementia’. The geriatrician medicated him so much, we lost our Dad for a while. I remember the dribbling and the lost soul wondering what the heck was happening. (Changes which occurred after he started the medication). Mum was advised to send Dad off to Day Care – it would give Mum a break. When he attended ‘Day Care’, Dad played cards, which he loved. Now I ask why wasn’t Day Care referred to as a Social Club? He was able to play what I call ‘thinking” card games, ie euchre etc. He was treated as an infant. Thank you Kate for raising these issues. I’m going back to the 90’s and there was nowhere we could turn to for advice. Please keep up discussing these important issues. What you say is so relevant. Bron xo

  9. Day after day you say it as it is Kate. I think Maureen’s answer to Day Care will be the same as when they offered her help to elevate mood. She will be as well versed in the side effects of Day Care, as she is in the myth that surrounds antidepressants for mild to moderate depression. Have they developed a ‘social imbalance’ theory yet to market their panacea?.

    • I think it is more than a myth around ‘Day’ care – adults simply do not wish to go somewhere, that sounds like child care. Re the anti depressants issue, I have family members, who have had mental illness all their lives, who still refuse treatment… that is a whole other topic!

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