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Family Research

NTG Family Survey

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Help Us with a Family Support Survey...

The NTG is undertaking a survey to obtain information on how to best provide information to families.  It is linked to our desire to expand the available information on dementia for families and to help us better understand where families get information and what information might be of most use.

A brief 13-item survey has been developed containing questions tapping some key areas related to information and its access. Completing the survey shouldn’t take more than 10 minutes.

We’d appreciate it if you might take a few minutes to complete it.


We do not ask for anything that would identify you and the information will be used only in aggregate form to help us plan our information initiative.

Anyone who is a friend, advocate, mate, family member, or other care partner can participate.

If you have any questions about the survey, please contact NTG's Family Support at or  Dr. Adel Herge via email.

If you would like a copy of the IRB approved survey letter please email Kathryn Pears at


The survey link is:


The results of the survey will be posted on our website. 

Family Support Committee

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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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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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