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Family Research, etc.

NTG Family Survey

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Survey completed and results put into action!

The NTG Family Supports Group has completed its national survey of families and issued its proposal for action for 2023-24.


The survey revealed the needs of many families related to information and supports.  Some 530 respondents participated over a period of nine months. Some 30% of the respondents were in the 56 to 65-year-old group and 62.5% identified as parents to individuals with an intellectual disability whose loved one is between the ages of 26-55.  The survey told us that 59% of the respondents are caring for their loved one at home.


As to informational needs, the respondents told us that they wanted more information about the process of aging, future planning, resources, and early screening/diagnosis. When asked about their preference for obtaining this information most noted that they preferred to have this information available through online training (webinars), articles, and one-page fact sheets/pamphlets.


Based upon the results of the survey, the Group decided to move actively to develop a 4-Part Family Webinar Series this Fall which would address following topics that are aligned with the survey results: (1) The Process of Aging, (2) Behavioral Challenges and Supports, (3) Life Planning Strategies, and (4) a Family Perspectives Panel Discussion. 


The Group has organized a series of webinars about the topics above (aging, dementia, and life planning).  The webinars will begin in February 2024. To complement the webinars, the Group is also developing a series of podcasts.  Information on the webinar series will be available shortly.

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National Involvement

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The Family Group members are on the road! 

Several of the members, Marianne Barbera and Kathryn Service, were at the NDSS Adult Summit meeting held in Cincinnati, Ohio on November 9-11, 2023. They were there to participate in a joint NTG -NDSS educational session on family supports, and also to represent that NTG at our exhibits table.

Informaton on the NTG session will be posted here shortly.

For more information, go to the NDSS Conference site.

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Be Aware of Over-medication

Increasingly, research has found that many older persons use multiple medications as they age.  This 'polypharmacy' has been found to be the prime risk factor for the development of adverse drug reactions (ADRs) if the medications taken are not carefully monitored.  A very recent study found that medications commonly associated with ADRs included those used to treat high blood pressure and other cardiac conditions, medications for neurological conditions such as pain control (e.g. tramadol and certain antidepressants), along with antibiotics such as amoxicillin. Examples of adverse effects included dry mouth, ankle swelling, headaches, dizziness, gastrointestinal [GI] upsets, sedation, and confusion. Adults prescribed 10 or more medicines had a threefold increased risk of experiencing a reaction, and women were at least 50% more likely to have ADRs than men. The research involved 592 patients aged 70 and older monitored over a six-year period. One in four experienced at least one ADR. The study involved older adults in the general population -- not adults with an intellectual disability.

However, some older adults with an intellectual disability are on multiple medications (including psychotropics), some prescribed earlier in life and potentially involving multiple practitioners. Therefore, it is advisable for caregivers or advocates to request a periodic review of all medications being taken and whether they are still necessary and whether any prescribed medications might be producing or have the potential to produce adverse reactions.  Such review may be undertaken by the current health practitioner or a pharmacist.


The research was reported in an article in the British Journal of General Practice.  To read the full report, click  here.



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Caregiver Research

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Lessons from research...

Various university researchers have undertaken studies that provide information useful to persons who are providing supports or care for adults with intellectual disability living with dementia.  This site will list and highlight some of the interesting and valuable ones.  In the meantime, a listing of studies and their findings can be found in our 'Bibliography on Dementia Care Management and Intellectual Disability.'

This collection of published studies summarizes the work of many workers worldwide on topics related to dementia and intellectual disabilities.  Some of these studies examined some issue related to family caregiving.

Readers interested in particular topics may use the 'SEARCH' or 'FIND' function on their Adobe PDF Reader. Simply type in a key word -- for example: families, caregiver, carer, or family -- and it will be highlighted in each article containing the word.  Then you can read the abstract and cursor to the next one, and so on.

Look for the Bibliography on the Publications page.

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Conference Presentation on Family Support

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Kathryn Service to speak at Alzheimer Disease International Conference

NTG Board Secretary, Kathryn Service, will be presenting at the upcoming 36th Global Conference of Alzheimer's Disease International in Krakow, Poland in April 2024.  Her presentation, 'A Support Group for Families with a Member with an Intellectual Disability Who is Living with Dementia: A Case Study and a Story' will cover her experience with the NTG's family support group program.



For more information, go to the ADI Conference site.

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