Have a look at the DEMQOL and the DEMQOL proxy. We used these in a study of patients with mild to moderate dementia who were undergoing hospital treatment.

Hey Jodi,

it depends on dementia severity, setting, self- or proxy-assessment and uni- or multidimensionality of the measure. Several systematic reviews exists. For example

Perales, J., Cosco, T. D., Stephan, B. C., Haro, J. M., & Brayne, C. (2013). Health-related quality-of-life instruments for Alzheimer's disease and mixed dementia. Int Psychogeriatrics, 25(5), 691-706.

If you have further questions do not hesitate to contact me.

Best wishes

Martin

My recommendation would be QUALID

Weiner M.F., Martin-Cook K., Svetik D.A, Saine K., Foster B., Fontaine C.S. 2000. The quality of life in late-stage dementia (QUALID) Scale. J Am Med Dir Assn, 1 (3), 114-116

Barry Gurland and his group at Columbia PI have done extensive work in that area. I tink they have a specific QOL scale as part of their procedure

There are many health related quality of life questionnaire but the problem is that they are self reported. Dementia and its severity would interfere with the validity of the patient's rating regarding how they perieve the quality of their life. This is particularly true because you need to measure the effect of your intervention and you will include three measure; before, during and after. I recommend to design your study to be observtational study and measure the patients' physical function, social activities,...etc as indicators for the quality of life.

Dear Jodi:

I recommend:

1.- J. Hoe, Msc, G. Hancock, PhD, G Livingston, MD and M. Orell, PhD.

Quality of life of people with Dementia in residential care homes.

The British Journal of Psychiatry (2006) 188: 460- 464.

2.- Quality of life Dementia Assessment Measures.

www.dementia-assessment.com.au/quality

Sincerely.

Diana from Perú.

We have used the QUALID, the EQ-5D by proxy and the QOL-AD in a study with people with dementia living in nursing homes.

1: Marventano S, Prieto-Flores ME, Sanz-Barbero B, Martín-García S,

Fernandez-Mayoralas G, Rojo-Perez F, Martinez-Martin P, Forjaz MJ; Spanish

Research Group on Quality of Life and Ageing. Quality of life in older people

with dementia: A multilevel study of individual attributes and residential care

center characteristics. Geriatr Gerontol Int. 2014 Jan 24. doi:

10.1111/ggi.12238. [Epub ahead of print] PubMed PMID: 24456126.

2: González-Vélez AE, Forjaz MJ, Giraldez-García C, Martín-García S,

Martínez-Martín P; Spanish Research Group on Quality of Life and Ageing. Quality

of life by proxy and mortality in institutionalized older adults with dementia.

Geriatr Gerontol Int. 2014 Jan 8. doi: 10.1111/ggi.12225. [Epub ahead of print]

PubMed PMID: 24397787.

3: Pino L, González-Vélez AE, Prieto-Flores ME, Ayala A, Fernandez-Mayoralas G,

Rojo-Perez F, Martinez-Martin P, Forjaz MJ. Self-perceived health and quality of

life by activity status in community-dwelling older adults. Geriatr Gerontol Int.

2014 Apr;14(2):464-73. doi: 10.1111/ggi.12119. Epub 2013 Jul 26. PubMed PMID:

23890252.

4: Diaz-Redondo A, Rodriguez-Blazquez C, Ayala A, Martinez-Martin P, Forjaz MJ;

Spanish Research Group on Quality of Life and Aging. EQ-5D rated by proxy in

institutionalized older adults with dementia: Psychometric pros and cons. Geriatr

Gerontol Int. 2014 Apr;14(2):346-53. doi: 10.1111/ggi.12108. Epub 2013 Jul 8.

PubMed PMID: 23829556.

5: Martín-García S, Rodríguez-Blázquez C, Martínez-López I, Martínez-Martín P,

Forjaz MJ. Comorbidity, health status, and quality of life in institutionalized

older people with and without dementia. Int Psychogeriatr. 2013

Jul;25(7):1077-84. doi: 10.1017/S1041610213000458. Epub 2013 Apr 11. PubMed PMID:

23575107.

6: Rodriguez-Blazquez C, Forjaz MJ, Prieto-Flores ME, Rojo-Perez F,

Fernandez-Mayoralas G, Martinez-Martin P; Spanish Research Group on Quality of

Life and Ageing. Health status and well-being of older adults living in the

community and in residential care settings: are differences influenced by age?

Aging Ment Health. 2012;16(7):884-91. Epub 2012 May 24. PubMed PMID: 22621325.

QoL AD is the intrument you may be looking for. It is easy and straghtforward, with one version for the caregiver and another for the patient. Also, try and get CASP 19, not specific to Alzheimer's.

Hi Jodi,

I am a dementia care nurse (and doctoral student) from Northern Ireland.

In our units we use a tool called "Dementia Care Mapping" which was developed by the University of Bradford.

It is an observational tool that is used by nurses to estimate the level of "wellbeing" for people living with dementia. The tool is usually used over a period of 3 hours and assessment takes place once every 5 minutes. The tool is validated and originated from the work of Tom Kitwood (1997).

The idea is that nurses (or researchers) will be able to assess a persons level or wellbeing over a sustained period of time. The observational tool can be used on up to 5 people (from early to advanced dementia) simultaneously.

If you are interested in finding out more please contact me as I would be happy to help. In addition, I am currently working with a colleague (as 2nd author) on a review of the literature on "horticulture therapy for people living with a dementia".

Best,

Gary.

As a dementia researcher who is just about to undertake qualitative work on shared decision making in dementia having previously carried out office based epidemiological dementia research, these answers are all very informative and I will bear them in mind in the coming project. Thanks.

Dear Jodi,

MMSE and QOL-AD, a brief, 13-item questionnaire is the best solution for this

Dear Jodi,

I agree, QOL-AD will be a good solution.

There's a good review article that considers the measures noted and many others

Ready, R.E., & Ott, B.R. (2003). Quality of life measures for Dementia, Health Qual Life Outcomes http://www.hqlo.com/content/1/1/11

I think a key issue to consider is from whose perspective are you measuring quality of life. For that reason I also like this article which reviews the issue from the perspective of residents, staff and observers

http://www.alz.org/national/documents/grnt_027_036.pdf

Any questionnaire that answers questions on the patient's ADL is qualified. This is because, the daily quality of life of an individual cannot improve beyond the ADL.

Another idea is the use of Frenkel's Exercise as check-mate which you mark side-side with any questionnaire you choose. You can as well pick up the frenkel's exercise particulars using them to make them as questionnaire.

I am reading through all of the responses, and just want to THANK YOU all so much for being so generous with your time and your resources. I am taking my time to go through each, to find which tool will be best for the study. The study will be mixed methods, and gather data from the perspectives of caregivers, staff & residents. I really am so appreciative, and will let 'you' know what was the decision in the end!

Very interesting discussion . Mainly because it reflects the need to use definitions and remain close to them. The question as to what extent "quality of life" could be meassured without taking in account the opinon of the patient itself is questionable. Without it, such evaluation is more like an "observational tool " that estimates the condition of the patient ( as mentioned above by Gary Mitchell ) . Likewise , ADL items

do not reflect quality of life but just the functional condition of a patient..

Of the self-report measures of quality of life for people with dementia, there's no doubt that QoL-AD has much to recommend it. It can be used with people with a wide range of impairment, and in several evaluations of psychosocial interventions has been shown to be sensitive to change. It will potentially show you whether your intervention makes a difference to the person's overall QoL. I would suggest you also use an observational measure during the activity itself, to gauge how much immediate pleasure and benefit is derived from the activity. This 'here and now' benefit can be an important outcome in itself.

I agree with others that one should be circumspect about instruments that incorporate ADL function as a measure of "quality," and that input should include the patient's opinion if at all possible. Severe dementia and aphasia may preclude reliable input from the patient, however. Whatever instrument one chooses, I would recommend looking at whether or not the particular instrument has been validated in any way in a sample with dementia severity comparable to what your study is including.

I agree with Bob Woods regarding an observational measure and Brian Ott regarding the value of ADLs in connection to QoL and also the need for input from participants themselves. A person does not have to have fluent linguistic ability to show, through his or her actions, that a garden is a pleasant place to be. How often does the person choose to go there instead of other alternatives? Also, the MMSE is irrelevant to any of this. A person's ability to recall particular bits of information about location or seasons or doing serial seven subtractions has little to do with whatever pleasure he or she might take in being surrounded by life in a garden. Finally, people who are participants in a day program for those diagnosed with dementia are not patients, except to their medical professionals. They are people and "patient" cannot be their dominant social identity lest you want to define a person by his or her malady alone and relatively ignore everything else that is healthy about him or her.

These are of course legitimate views but the question is how could their quality of life be meassured . The person ( not the patient ) should express in some way his or hers pleasure or satisfaction with something and this is difficult to assess objectively in people with cognitive deterioration

By the way , DSM V - calls for adopting and using the term neurocognitive impairment

instead of dementia which is an old term " smelling " of stigma..

I agree that family members and caregivers who know the history of the person can identify what will assist quality of life for a relative, especially when he/she is unable to express their views. If the person with "dementia" is in a long-term-care facility--I believe that quality of life/or care should also be measured by rating external factors--such as what that facility provides for the person (my perspective is that a garden would add to quality of life--especially if the person is able to participate in the gardening). Also--measuring quality of life could pertain to mobility issues. I have seen first hand--that unqualified staff forcing an 80 year old into a wheel chair (to rely on the wheel chair for mobility when he is still able to walk) would take away his quality of life. Luckily, the home he is in now allows him to walk up & down the halls with his walker and he appears happy. Also, in a facility--if adequate intake of water is not provided--this affects the brain and can cause falls or visits to the hospital. Recently, I have seen first hand--with parents in their 80's and a friend who had an 86 year old mother--that in old age--women are more prone to bladder infections--which I saw with my mother & my friend's 86 year old mother who died from this--they both exhibited symptoms of "dementia" (and symptoms similar to my 33 year old son with "schizophrenia"-- so hopefully our medical system is looking for underlying causes to the psychiatric symptoms (such as a bladder infection or ovarian tumours). With regards to the DSM-5 -- psychiatrists look at symptoms -- Thomas Insel from the National Institute of Mental Health stated that we need to look at imaging, genetics, physiologic and cognitive data to see how these clusters relate to treatment response. Let me add to that--that from my readings--for "dementia"--we should also be looking at hormone changes --as "pregnenolone" hormone may be promising for those with neurocognitive impairment or fish oils/evening primrose oil such as Equazen (latest research)--so possibly could enhance quality of life.

Those are good points, but let's not conflate quality of life with quality of care.

There are several QoL instruments specifically developed and validated for use in patients with dementia (look for reviews in PubMed). Difficult to recommend one specific scale whithout knowing the objective of the study. Selection has to be carried out by the investigator considering the pros and cons of the available measures and why they are going to be applied. The matter of ADL has not sense: it is construct different to QoL.

DemQual. Whole systems tool to measure cognitive function, ADL, social interaction/intervention etc. Developed by Prof Subee Banerjee, Dementia Lead for Department of Health, UK.

I agree with the opinion of Pablo Martinez-Martin. The discussion of ADLs as Qol indicator is very old and goes back to the definition of Lawton Qol which consists of subjective and objective factors. Newer approaches assume that the quality of life of people with dementia depends on the adaption and coping abilities of a person and the care system around the person.

Having been a nurse in Hospice for 5 years and Long Term Care nursing facilities for over 15 years, Qol is a topic discussed daily by families and residents (not patients). Some residents feel not having family or friends with them any longer affects Qol. Some feel they have no Qol because they have given up their life's savings and everything that defines them to come live in a room no larger than a garage. Being a former manager of a Dementia unit, witnessing residents interact with others and laughing or smiling makes me wonder if we are not stigmatizing them based on what we feel a Qol should be. My spouse is 67 years old. Became legally blind in 2005 and had to give up driving, being able to go anywhere without assistance, and something that was really loved, shopping. My spouse can no longer cook safely, and requires assistance with ambulation to prevent falling. Some people would ask what Qol is there left for my spouse. The question has come up and we discuss what Qol is wanted, expected, and needs to be provided. My point is, we can measure Qol by what we think based on stigma or objective data. The truth comes in subjective data and the person being granted autonomy. Even if a person has Dementia, allow them to make choices no matter how silly they may appear. It may mean nothing to you, but mean the world to them.

Can people with Dementia make real deliberated choices ?

It can depend on the level of the Dementia. If not allowed to choose between a red shirt or green shirt or iced tea and milk, what small bit of freedom they have has been taken from them. If we were to discuss could they make health care or financial decisions then no. However, this discussion is based on Qol. Qol is what the individual perceives life to be. I have seen individuals with the worst cases of Dementia (who believe it or not do have small windows of lucidness at times), be able to tell you that they want to wear the blue dress today or could they have a grilled cheese for lunch. Please keep in mind that just because someone has Dementia, does not necessarily mean that they do not have wants, desires, and choices (no matter how silly or ridiculous they may be) we as caregivers must respect those wishes and provide safety. If you were to have every freedom, every choice, every wish and every dream taken from you based on another person's assessment, would you feel as if you wanted to continue to live?

My point being, Dementia, Alzheimer's Disease, Mental health issues, HIV/AIDS, all people have the right to maintain as much freedom and independence as possible for as long as possible.

We are looking for a method to meassure Q of Life and not the degree of freedom.

This is not the same and giving freedom to do everything is not the goal . What about a patient with mild dementia but significant depression who expresses his wish to leave this world ..

In the medical field, freedom and Qol do go hand in hand. If a patient feels they have lost all freedom to make decisions then they will not feel they have a high Qol. Again, it is not up to us to judge what another feels Qol is. It is not a qualitative or quantitative measurement. Each day, we decide what our Qol is for that day. Whether anyone has Dementia or not, each day presents challenges that can influence whether a person feels that day holds quality or not. I suppose that we might be able to interject our opinions or judgments on what someone's Qol should be but I don't feel that it is totally plausible or ethical.

Yes .. But if we consider that loss of judgement and memory are some of the clinical characteristics of dementia then how can we atribute to a demented person the ability to evaluate ,' judge , remember and formate an opinion that lasts even for the shortest time period ..?

Jason raises a good point that it is hard to think of a valid way to rate another person's QOL, and I think that is why we have so many scales available. One can come up with a laundry list of cognitive, ADL and social variables that are measurable, then add them up, as many scales do, but this makes no sense, since differences are so widespread between individuals as to the relative importance of any one these items as well as differences in individuals' personal values. So, when we developed the Cornell-Brown Scale, we attempted to measure a person with dementia's current happiness/life satisfaction as the proxy for QOL using items that include both self report and observations. Not a perfect solution, but it does avoid some of the pitfalls that have been discussed.

I am interested in measurement of QOL as I just diagnosed clinically that my dad has mild dementia; yet to go for official assessment. Can I know apart from the Cornell-Brown Scale, what other tools are advisable?

Thank you sir. My point simply remains that we can develop a scale to measure anything but if it does not provide even a half way absolute result, can it be considered effective? We as professionals tend to look at people as a disease instead of a human filled with emotion and wants and desires. Patch Adams best illustrates the lost treatment art of compassion and respect and viewing people as people and not a disease.

I think quality of life is different for each individual.I would suggest it depends a lot on the individual values and beliefs,upbringing,expectations and well being.

In the past I have used SEIQoL to measure QoL with people with dementia over time. This tool allows individuals to identify up to five important areas determining their QoL ‘now’ whilst allowing them to give some description of why and what it is about their particular choice. The tool also weighs the choice ranging from whether it is the 'worst possible' through to the ‘best possible’. Thus allowing for identification of changes to what areas establish their QoL in the ‘here and now’ and might allow for an intervention over time to become detectible as important to them. The main downside is that you may require permission and also you have to purchase the SEIQoL wheels which depending upon your budget may prove costly.

How would you administer it? Would it be behavioral observations by experienced coders? caregiver's views? or a self administered survey? how sensitive? what stages of dementia? what do 'you' mean by quality of life? You may need more than one instrument. I would do a good lit review akin to the first link below and more current but towards functional status via an assessment by CMS's, the second link below. There are a few Activities of Daily living questions that are more general too that are part of the CDCs BRFSS that I think you can use freely. They are pretty broad and may not work with a small study.

I suspect that you may want to focus and define specific expected changes, mood stability or depression symptoms. You'd need to consider dose impacts and duration too (how long the benefits may last). Develop an outcome based hypothesis and match the tool(s) to the facet you expect to see a change. I may be skeptical but a general tool like AQoL, even ones test in Dementia populations DEMQOL,QUALID may not have the power to pick up the impact of your intervention. I'd suggest using three types, observational- train raters to assess videos that are blinded, self administered assessments and care giver assessments. You may want to have a longer baseline assessment to make sure that the study period is sufficient. All of these need IRBs and consents of course.

http://phi.uhce.ox.ac.uk/pdf/phig_older_people_report.pdf

second link

http://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Post-Acute-Care-Quality-Initiatives/Downloads/ASPE-Report-Analysis-of-Crosscutting-Medicare-Functional-Status-Quality-Metrics-Using-the-Continuity-and-Assessment-Record-and-Evaluation-CARE-Item-Set-Final-Report.pdf

Try looking at Sube Banerjee's DEMQOL. You may find it suits your needs.

Comparison of QoL-AD and DQoL in elderly with Alzheimer's disease

Objective: The Dementia Quality of Life (DQoL) and the Quality of Life in Alzheimer's Disease (QoL-AD) are the two most widely used dementia-specific QoL instruments in the world. We aimed to compare the psychometric properties of these two instruments and identify which is most adapted to use in geriatric consultations. Methods: To evaluate the psychometric properties of the French language validation of DQoL and QoL-AD, 123 patients aged 65 years and over suffering from AD (Mini Mental State Examination score greater than or equal to 10) were recruited in seven French hospitals and one Switzerland hospital. The DQoL comprises 29 items, ranked on a five-point Likert scale and measuring five QoL domains: self-esteem, positive affect, negative affect, feeling of belonging and sense of aesthetics. The QoL-AD contains 13 items giving an overall score ranging from 13 to 52 and evaluating the domains of interpersonal relationships, financial difficulties, physical condition, memory, mood and overall health. Results: Both questionnaires showed adequate reproducibility at 2 weeks interval (intra-class correlation coefficient greater than 0.80), good internal consistency (Cronbach's alpha coefficient greater than 0.70) and good convergent validity with the general health dimension of the Duke Health Profile. The time required to complete the QoL-AD was significantly shorter (p less than 0.0001). DQoL had better discriminant capacity (with at least one dimension significant for each subgroup of severity of cognitive decline, dependency, presence of depression or behavioural disorders). Conclusions: For quick evaluation of QoL during consultations in geriatric care, the QoL-AD is preferable, whereas for the purposes of research and more in-depth evaluation, the DQoL is more suitable.

Source : NCBI ( PubMed ) : Aging & Mental Health

Hello Glenn

Very interesting and contributive. Has this study been published ? Could you please indicate the reference ( volume number , date,  etc?

so, I've gone back to the original question posed

I am searching for an instrument to be used to track possible improvements in quality of life for participants in an Alzheimer day program - a therapeutic garden intervention compared to activities as usual.

I think the discussion so far has pointed up the pros and cons of different instruments and raised the subjectivity challenges in the term QoL. However, are interventions shotgun approaches that have widespread multifaceted impact or should we be thinking more precisely about what a particular intervention should achieve? In this case what should a gardening intervention actually effect?

Also is there a need for widespread or prolonged impact or is there value in an intervention that has effects only in the moment?

Maybe we can make decisions about instruments (in this study and in others) if we are clearer about intended and expected effects. 

Comparison of QoL-AD and DQoL in elderly with Alzheimer's disease   Aurore Wolak-Thierry, Jean-Luc Novella,Coralie Barbe, Isabella Morrone, Rachid Mahmoudi and Damien Jolly a Faculty of Medicine, University of Reims Champagne-Ardenne, Reims Cedex France

Hi Arthur, here is the publication info:

b Clinical Research Coordination Unit, University Hospitals of Reims, Reims, France

c Department of Geriatrics and Internal Medicine, University Hospitals of Reims, Reims Cedex, France

Aging & Mental Health Published online: 20 Jun 2014 DOI: 10.1080/13607863.2014.927822

See work by Sydney Croog on quality of life and modify the scale as needed and essentially create a scale based on the model he sets for.

Thanks Glenn

Arthur

Another thought - there is a tool called the ERIC - it is Emotional Responses in Care. it is a non verbal tool of validated facial expressions in people with dementia. I ma not exactly sure where you would find this ( try google!) You may like to look at the technique we used  after moving 55 residents with dementia from a old nursing home to new dementia cottages. see Smith R, Mathews M  and Gresham M -attached. it is direct and simple. 

The article below will guide you to the correct tool :)

Dr. Angela Wooton

Measurement tools of resource use and quality of life in clinical trials for dementia or cognitive impairment interventions: protocol for a scoping review

Fan Yang,

Piers Dawes,

Iracema Leroi and

Brenda GannonEmail authorView ORCID ID profile

 Systematic Reviews20176:22

DOI: 10.1186/s13643-017-0418-6

© The Author(s). 2017

Received: 2 June 2016

Accepted: 18 January 2017

Published: 26 January 2017

 I am probably going to use the QUALIDEM to measure Quality of Life in a residential center with dementia patients.

Has anyone used this tool in a study?

Dr. Angela Wooton

[email protected]

I've used the Rogers CARE or the older OARS=PADL

Jerry Goldstein

Thank you Jerry Goldstein!

QUALID was successfully used in at least one dementia study (American Journal of Alzheimer’s Disease (2015) Vol. 2 No. 1 pp. 24-37). You can find it in Assessment Scales for Advanced Dementia. Volicer, L. and Hurley, A.C. Baltimore: Health Professions Press; 2015.

Thank you Ladislav Volicer

I would look at th Macotte and Granr "Everyday Functioning book.

Jerry

Dear Angela,

I have used the German Version of the QUALIDEM for several times. I have developed a user guide for the Instrument. Based on the item definitions and examples the QUALIDEM is the only Proxy- or Observation based Instrument with sufficient inter-rater reliability. All other proxy- or Observation based instruments showed a weak or questionable inter-rater reliability.

Ok, thanks Gerald. I will do that!

Enjoy this beautiful weather!